Early Intervention Services

Early intervention services is a state program to assist in identifying and treating developmental delays and disabilities for children ages 0-5. Liam began with Northampton County Early Intervention at just a few months old to evaluate his muscle tone. To qualify for services in Early Intervention at least one of the following criteria needs to be met:

· At the evaluation a score of 1.5 standard deviation or a 25% developmental delay in one or more of the areas listed above or,
· A child must have a physical or mental condition/diagnosis that has a high probability for a developmental delay or,
· An Informed Clinical opinion can be used to determination that a child requires supports and services even though they might not have a developmental delay according to the score of the evaluation.


We have been very grateful that this program is set up in such a way that Liam will qualify for services even though he doesn't necessarily have a 25% developmental delay... Liam qualifies for services based on the fact that he has a diagnosis of Hypoxic Ischemic Encephalopathy, a traumatic brain injury which occurred during birth. Unfortunately this diagnosis will stay with him for the rest of his life. Early Intervention has been consistently evaluating, monitoring, and treating Liam for the following conditions: torticollis;evaluating/monitoring for equal and adequate muscle tone; delayed speech; aspiration of thin liquids, and most recently low muscle tone and foot pronation. We have worked with the following: physical therapy, occupational therapy, speech therapy and feeding therapy. We have the highest hopes for our little man that any issues that have arrived or arrive in the future can be quickly identified and treated. With a diagnosis of HIE, it may be hard to identify something abnormal that is occurring with the infant/child, even if there are 6 or 8 doctors involved in their care. This is partly due to doctors appointments running 15-20 minutes and most of the time we are told there are no large issues and we should be happy with how "high functioning" Liam is. Every doctor that has ever seen Liam has been overly supportive of EI services because they monitor/treat children in one hour intervals which is so important in identifying potential issues before they snowball into something larger. We have been very satisfied with the care we have received and continue to receive, as they are such an integral support system for us first time parents attempting to navigate this diagnosis.

In the latest news, we are so proud to say that Liam has been discharged from speech therapy. Liam was noted to have a minor speech delay at about 13 months. Immediately after this was discovered, we learned that Liam was aspirating thin fluids, which was causing his chronic ear infections, and what we now believe may have caused his asthma and multiple respiratory infections throughout his first year. Since we have been treating the aspiration by thickening fluids, Liam's ears and lungs have cleared up and his vocabulary "took off" with some extra assistance with speech therapy. Liam has been discharged as he now has the ability to speak and communicate at a more advanced rate that some other children his age. There are times I am absolutely blown away by the things Liam says, remembers and communicates to me. He can now tell us his first, middle, and last name!

Liam has been involved with feeding therapy for the better part of a year, which has assisted us in identifying that Liam may have some low tone/sensory issues in his mouth/throat. These issues were often previously leading to stuffing, and pocketing of food. Liam also had a tendency to "chug" fluids which we recently learned predisposes him to more aspiration even if fluids are thickened. Feeding therapy assists us in rerouting these behaviors, and they have drastically decreased with time. At this point we have our feeding therapy sessions once monthly just to have someone overseeing Liam's progress in the home, while we continue with NMES treatments at Good Shepard to hopefully treat Liam's aspiration/delayed swallow. 

Liam was previously discharged from physical therapy as no issues were noted at the age of 12 months. I recently requested another evaluation after the Lehigh Valley Hospital therapist picked up that Liam has some pronation of his ankles, which may be caused by low tone. Unfortunately...this session identified some abnormal behaviors and possible underlying tone issues. 

We identified that Liam is still pronating his feet, left more than right. Basically, this looks like this:

 

Our game plan with this issue is to assist Liam in developing a "natural" arch by challenging him physically with several different surfaces in bare feet. This is one of the large reasons we will be taking Liam to The Little Gym! If this issue does not resolve by age of 3, Liam may need supports placed in his shoe to prevent any complications or injuries. In addition, we have also found during our evaluation with physical therapy that when Liam jumps, he lands on straight legs. (I have thought that this seems odd!) Our therapist has explained to us that Liam has some low tone in his hips and knees, as he should definitely be landing on bent knees. If this continues Liam is at risk for hyperextension and possible injury, which we of course want to avoid! We also noticed that Liam does not like to come down the steps using both feet. Liam only comes down with left foot leading unless we really work with him to do otherwise. After this last therapy session, it has been decided that Liam is experiencing some weak eccentric contractions in his legs, which I will try to show you below:

We have been assured that these muscles can be strengthened, and have been given exercises to do. We are excited to get Liam a mini trampoline to help him strengthen these muscles! Liam has found such a brilliant way of compensating for these weaknesses that he is not having a hard time keeping up with other kids his age. We are very confident that Liam will strengthen these muscles and continue to amaze us! I have set up an evaluation at Good Shepard's physical therapy gym, just for an extra opinion since they are so wonderful. As a mom, it cannot hurt to have more information! I will keep you posted on our journey!

That's all for now! We are very excited for the upcoming holidays with our little miracle! We hope everyone has a joyous holiday season, Love to all <3

Latest on Liam

Hi everyone! I wanted to give you all a very brief update. We started therapy at Good Shepard Rehab a few weeks ago doing VitalStim therapy three days a week for Liam's dysphagia. Every Monday, Wednesday and Thursday we take Liam's breakfast and see a speech therapist who administers the therapy. Liam is doing awesome! He helps the girls "clean" his skin with the prep pad and even puts his head all the way back so they can put the "stickers" on his throat. I wanted to take pictures so you all could see what this looks like but unfortunately Good Shepard does not allow any picture taking. Liam is so brave, there are times the stim is uncomfortable and he gives me a sad face and starts whining and pulling at the stickers...it is so hard for me to watch and I just want to cry, but over time I have realized that putting some kid music on pandora really helps distract him. Each day, the intensity of the stim treatments are increased, and eventually we hope to find Liam's therapeutic level. When the stim treatment is administered we give Liam spoonfuls of water for him to practice swallowing. We often hear the familiar "gurgles" when the liquid does not go down the correct way. When we identify this, we try to get Liam to cough, to clear or move the liquid from where ever it is. Liam has done really well with all of this, and he is starting to clear his throat on his own!  We don't know how long the treatments will last at this time. What we do know is that at some point in the future Liam will have another swallow study to tell us if things have improved, but the therapists feel it will be a while longer until this happens. Sorry if this isn't the best update but words are starting to go blurry...until next time I hope everyone had a wonderful Halloween and is enjoying lots of candy! Love to all!

VitalStim Therapy

Hi Everyone! We have some big news we want to share with you! As most of you may know, Liam was recently found to have dysphagia, or difficulty swallowing. Since April of this year, we have been treating Liam's dysphagia with traditional methods including thickened liquids which helps prevent aspiration of liquid into the lungs, as well as weekly sessions in feeding therapy with an occupational therapist. We are absolutely astounded by the progress Liam has made in the last few months....there are no other words to explain how excited we are. The dysphagia was causing aspiration. What this means is that when Liam was drinking fluids they were not going down his esophagus as they were supposed to. We have learned that the aspiration was causing some issues. For example,  Liam had chronic ear infections which caused an inability to hear properly, leading to a mild speech delay, which then lead to a mild communication delay. On top of this, Liam's first year of life was riddled with several high fevers that required constant antibiotics, asthma with frequent wheezing which required daily nebulizers to help him breathe, and other several eye/sinus infections that we could never quite keep under control. Since we have started treatment, we have not had one ear infection! I did recently take Liam to the doctors office for a cold, and the doctor said his ears looked great and his lungs sounded clear! This was the best feeling ever! Liam's speech delay is completely gone, and we eagerly anticipate him being discharged from speech therapy in the very near future. Through this whole journey, the most amazing thing that has happened so far is the day I asked Liam, "who are you?" and he said, "Liam." The verbal and cognitive skills required to meet this milestone are so important, and of course I teared up....I am so proud of him! Liam's frequent fevers are mostly gone, as is his congestion. Liam's speech therapist often points out that "he is like a completely different kid" since we started treatment! Now the important thing is that although Liam has come such a long way and is doing awesome, a follow up swallow study is still showing abnormalities with his ability to swallow. The risk of aspirating and possible resulting illnesses such as pneumonia, are still high and need to be monitored. Until recently, there were no effective methods for treating dysphagia. However, in August we met with our developmental doctor, Dr. Kuchinski, and she explained there is now a therapy called VitalStim that can actually help improve Liam's ability to swallow.

VitalStim is a therapy which works through the use of PAINLESS Neuromuscular Electrical Stimulation (NMES). Electrical stimulation is used to aid muscle strengthening to "rehabilitate" the swallow.We are hoping as an added benefit that Liam will have an improved sensory awareness of the food he is eating, since this seems to be one of the areas he is weak in. Basically, what happens is a therapist will attach electrodes to Liam's neck which will provide stimulation to the target muscles, and this will occur during a meal. We have completed an evaluation with Good Shepard and Liam has qualified for 3 sessions per week.  I believe we will start in the next week or two. With all of this being said, our first week will be about seeing what Liam can tolerate. I have been assured that this therapy is absolutely painless, although there may be some funny sensations. One of the reasons I really think Liam will do well with this is that one of the first suggestions our OT gave us was to get Liam an electric toothbrush for additional stimulation, which he absolutely loves!

If you would like more information on this therapy I am including the link here: http://www.goodshepherdrehab.org/services/pediatric-rehabilitation-developmental-pediatrics-allentown/outpatient-rehabilitation-and-4

Our little warrior has once again struggled through adversity and beat it! We are so amazed by him each and every day, and even more so now that he is developing faster than we can even handle. He is such a joy to be around for each and every one of us, I just couldn't imagine our world without him. He has improved not only my life, but me as a person. Whenever I am having a bad day, I just imagine his cute little giggle and he lights up my day!

For now, the Nagy family could not be happier with how everything is going! Of course, we would appreciate some positive thoughts, vibes, and prayers that this therapy is effective and we no longer need to mix the lovely thick- it into Liam's fluids.... or worry about him drinking the bath water! Of course we know that whatever the outcome, we are just so lucky and blessed with our miracle and we have such an amazing bright future ahead.

Love to all, I will keep you updated with our progress!

The journey of Giving: A blessing in disguise

For some reason lately, I have been reflecting on the act of giving. Not giving gifts in the physical sense, but more giving of self. Perhaps it is because I feel I am constantly giving everything I have all day long, or maybe it is the concept that I never realized how much I had to give until I became a mother. Even at 19 months, this whole role of motherhood still never ceases to amaze me. I have been on journeys I never could have dreamed of, and I now realize it was not only necessary, but worth it to get to where I am at this point in time (as difficult as some moments were.) There is a very real truth to the saying motherhood is the only place you can experience heaven and hell at the same time. Anyhow I digress....

From the very first moment I wake up in the morning, my thoughts are not my own, but directed towards my family, my job, my house, and the "agenda." I have consistently struggled to find a few moments for me in the last 19 months, but now I have it down pat. As long as there is something in the day I can call my own, weather it be my warm cup of coffee in the morning, my bike ride at lunch, or my pedicure on the weekend, my sanity is intact. I am not sure if this is true for every new mother, but this sudden absence of taking myself into account was alarming. I have always been very invested in MY future, MY needs, MY interests. Just like that, suddenly  "I" was gone in an instant. I was not shocked by how unselfish I quickly became, rather, how easy it was. There were days I didn't shower, I didn't have coffee, and I didn't sleep; eventually it took its toll and I looked in the mirror and realized the person looking back was a complete stranger. Since that very moment in time I have forced myself to connect with this person I now am, GIVE myself just one thing I want - no matter how small. As a matter of fact, I have gotten quite good at this...my husband spent the the majority of his time last night setting up our road bike on an inside trainer with a cadence sensor for me. I was happy he reminded me of that fact, it is important that I continue to strive towards this goal to never lose myself again. It is an ongoing challenge, when pieces of you go missing with your first waking moment in the morning. In the beginning I needed to take baby steps, and that lead me to where I am today. Most of my daily routine is of course dedicated to my little sunshine : ) and my amazing husband....what is left is evaporated into my job, which I am very dedicated to. Then comes immediate family, extended relatives, appointments, making/cleaning up dinner and other loose ends like making sure there is food (and COFFEE) in the kitchen. I assume that this is where I began to ponder this topic - how is there anything left to give to anything else. What happens when your tank is dry and the reserves are empty??? How do we manage to find a few minutes for yourself each day? My answer came to me tonight - you just do. I am a firm believer that moms have superpowers, we just need to tap into them. I have discovered that at the end of the day, after the insanity of appointments, meetings, errands and information overload I kiss my munchkin, and spend a few minutes with my husband... and all of my pieces return to me, and I feel whole again. Ironic right? This role of motherhood that almost once stole my identity, has also has returned it to me. I know without a doubt becoming a mom has made me a stronger woman and a better person overall. One of the reasons I find fascination with motherhood is because this role is somewhat of an enigma to me. I watched my mother give,and give and give, and she gave so much that she eventually gave UP. I still to this day don't completely understand it completely, but somehow illness and her inability to put the bottle down resulted in losing her at the delicate age of 6. It was a known fact that she was going to "leave us" to go to heaven. My mom and I used to talk about what color heaven was. Even if she didn't tell me (in other words) I saw her struggle through the end stages of liver disease, and even at my young age I knew something was terribly wrong. We even have an oversized oil painting with my two older sisters and I standing around her, all of us in white including her. This painting haunts me to this day. Her expression was morose; she knew. It makes me sad, that the three of us girls could not complete her at the end of the day as Liam does for me, even if my dad was out of the picture by then. It is tragic to me that all the she gave to create her family did not in turn perfect her life to the degree I feel my family does. As a mother I can agree the constant giving can be draining, but it is hands down the highest honor I have ever had, and gives me nothing but joy. After my mother passed away, my father stepped up and created his own business and did very well, I didn't comprehend all he sacrificed to give our family a good life. I saw a very unhappy, grumpy man that I felt sad for all the time. Looking back, what my father did for us behind the scenes, was amazing. I am very lucky to have the relationship I have with my father after all we have gone through.  My sister closest in age, learned everything their was about giving from a very young age. Being less than 2 years older than me, she took over the house chores, taught me how to do my hair, and pretty much became my mother hen. I know it wasn't easy, I was a clingy kid with confidence issues who had night terrors (and we shared a room). The support my sister provided me, the role she took on meant losing a part of her childhood, sacrificing something I will never fully understand. Every thing I know about motherhood comes mostly from what she and a few other phenomenal women taught me over my years, including my godmother, my grandmoms, and my aunts. My sister is an amazing mother. She is tough on her kids, has very high expectations, and would do anything for them. We often comment about how happy it makes us that they will never know some of the hardships we experienced.

So to sum up this long post, I am urging moms out there- please take time for yourself! Start today! Start with baby steps, like taking 5 extra minutes for HOT coffee. You will find that in all the giving you do throughout the day- you need to give to yourself as well! If you find the ability to include yourself, you send yourself blessings tenfold each day! You will remain connected to the single most important person in your corner...YOU!

Testing Testing 1,2,3

Hi Everyone! I know I haven't updated in awhile, but we have been SO busy! Since the last time I wrote, so much has happened. A few weeks before Liam turned 18 months we visited his GI doctor, Dr. Paul. We were following up on a test called a "milk scan" to check for reflux which came back inconclusive since Liam only would drink a very little bit of milk that morning. However, Dr. Paul felt that since what the milk scan did show was positive, we could pretty much rule out reflux for our little man! I was SO happy! One more medication down, since Liam was on Pepcid to help with his reflux. At this point we decided to schedule another swallow study to see if Liam was still aspirating fluids. I was told that it could take up to a month to schedule this test, and then when we sat down with the scheduler they had an opening right away! Lucky for this momma, I now have approved FMLA to take when we are busy with appointments! This test did not go smoothly. Liam is at an age where he actually gets scared in certain situations. Being in the radiology room really freaked him out, let alone being strapped into a chair high up and his mom had to stand a few feet away. My anxiety was sky high the whole time, and seeing what this put him thru I decided we are done with any recommended testing for awhile. Liam chugged his milk, and of course although it was thickened he was still "penetrating." What this means is that when Liam drinks really quickly, he cannot properly control where the fluid is going. The GREAT news is that he did NOT aspirate fluid into his lungs, however, the risk is still very high since it appears that Liam's swallow reflex is somewhat delayed. When a normal person drinks, your swallow reflex kicks in at a certain point, and when this happens a "flap" in your throat covers your airway so what you are drinking does not go into your lungs. Liam's swallow reflex is intact, but delayed, and as long as this is happening we will have to follow precautions, continue with feeding therapy, and monitor for aspiration. Liam also trialed with unthickened water during the test. The good news is that if Liam takes just a sip at a time - he does great and the fluid is able to go right where it should. The bad news is that Liam does not usually take a sip at a time. This is where feeding therapy comes in. We have been working with Liam on taking sips, and have made some progress. As a mom, I am SO thankful for the ladies that help with Liam's feeding and speech, they are truly angels. Being a toddler, trying to work with Liam can get ugly when he throws his tantrums or just doesn't want to do what your asking, but these ladies have patience of steel and I know we wouldn't have made this much progress without them. My other hope is that Liam "grows out" of this delayed swallow down the road. Toddlers can be very uncoordinated, and although these results are not "normal" we are hoping in the future he will be able to drink normally like every other child!

We also had a follow up with Liam's allergist. They reviewed our blood work and all of Liam's immune studies came back NORMAL! All around Liam's illnesses have decreased since treating his allergies and asthma, and we are hoping we now have things under control! The only abnormal test that came back was Liam's vitamin D level, and we now have Vit D drops to put in his milk at bedtime! Since Liam is getting older we were able to switch his daily nebulizer treatment out for a toddler inhaler. I can't tell you how much easier this makes our morning routine, Liam even loves taking his inhaler in the morning! The only time we will need to use Liam's nebulizer from now on is if he begins to wheeze, which thank goodness has not been happening!

In other news, Liam turned 18 months on July 9th! I don't know where the time went, but our little man is growing up so quickly! We also went to the beach the end of last month and Liam enjoyed his vacation. Since being home, we have also been visiting with family, and had our first trip to the Lehigh Valley Zoo!  That's all for now ~ love to all!

Happy Birthday to me!

Hi everyone! So today I turn 29, and my amazing husband gave me some alone time this morning to do whatever I wanted : ) It was much needed since the little man is running a fever and has been quite fussy, and we were also in a near accident yesterday (all ok) and I slammed my knee into the dash and am pretty uncomfortable...last evening Liam's temperature which I had hoped was just teething spiked up to 103. Part of me wanted to let it go, but I kept worrying what if he had pneumonia or a terrible ear infection.....could it wait until we got to a doctors office during the week? The pediatrician's automated message told me it would be 2-3 hours before the triage nurse called me back. So I called the allergy and asthma doctor hoping Dr. Ververelli was covering the weekend and could advise me... no such luck. Of course her associate told me with Liam's aspiration and high fever we go get checked out...that's what I expected. I want to just let my kid ride his fevers out like any other toddler, but there is always the what if game going on. Ultimately we decided to take him to children's to get checked out. Ears and chest xray were clear and we got Liam's fever down (YAY!). It was nice when the resident was absolutely amazed with how well Liam was doing, and then also told us, "you are doing everything right." It was exactly what I needed to hear in that moment....that moment sitting in the ER again asking myself how in the world we could manage to get this kid out of daycare full time.....or what other thing we could possibly do so he stops with this constant illness - he just finished another round of Biaxin May 24th and so soon again his allergies and asthma acted up now accompanied by a high fever. Liam being sick doesn't bother me - as a nurse I am fully aware that this is completely normal for any kid. Liam's illness affecting his development bothers me. He is doing so well going in the right direction, but how much progress can you really make with high fevers and terrible wheezing?......this just really makes me ponder... For now we are riding this fever out without antibiotics for a few more days and if it does not subside we will get into see the doctors this week. In the meantime we will continue doing everything normally. YES today is my birthday. We were SUPPOSED to go to a phils game and then a barbecue. Ok- the Phils game was not happening since my knee is banged up and Liam's asthma was terrible this am- but am I going to cancel a barbecue with my family and friends? NO. If we did this every time Liam got sick we would never leave the house. Liam was running a fever last year on my birthday as well... so while delirious last night we came up with a joke that I somehow transmit birthday viruses to Liam. LOL.


My biggest and most favorite birthday present EVER came to me on Wednesday morning this week. The county came to the house to complete Liam's annual evaluation. Of course my little munchkin was a hit with the ladies at the house, and he soaked up all the attention. His eval went great! Liam scored a 105 on the physical exam and his PT services are now discontinued. This is great to hear, since he has other therapies keeping us busy and it's nice for him to get a little bit of a break! Cognitively, I was told Liam scored one of the highest scores seen in awhile - 116. I am so proud of my little man, and there are so so so many woman who have been through what we have been through that would BEG to be told this about their rupture survivor. I am so proud of my munchkin! Liam's only minor deficit was in the area known as "self care." Basically, since Liam has recently started talking he hasn't gotten to the point where he initiates telling us what he wants. He doesn't tell us he is thirsty or hungry, he just throws tantrums until we offer it to him. With him making wonderful progress and having feeding therapy, it is only a matter of time until we get to this point, but until then we will have speech and feeding therapy to support us with our goals. In other news, Liam had a "milk scan" done this past week. This test is to check for any reflux or abnormalities with Liam's GI system. Liam wasn't feeling so well this particular morning and decided he did not want to drink his milk, so the test results are limited. What was seen was normal and absent of any reflux, but we may be told we need to repeat this test in the future. We follow up with Dr. Paul in early July.

For now folks that is ALL. I hope everyone is enjoying this gorgeous weather out there! Love to all, xoxo.

Catch 22

Hi Everyone! Just wanted to give a short, quick update. So Liam is on antibiotics again, it seems his allergies flared up with the change in weather. Unfortunately what this means is that my thought that Liam's asthma was related to the recently discovered aspiration was wrong. We noticed Liam began having a runny nose sometime over last weekend, and this was multiplied after we slept with the windows open. Honestly, I didn't think this was a super big problem. My first instinct was to have the AC on since I knew this is always better for someone with allergies. However,  my husband says to me "I would turn the AC on, but I need to buy a new air filter, unless you want to chance putting it on without replacing the current one." Well, here is one of the catch 22's. I went back and forth about it, and decided one night with the windows open couldn't be too much harm. Boy was I wrong! The next day Liam was super congested all day, and pretty much stopped drinking fluids. It doesn't help matters that his fluids need to be thickened... not comforting when your congested. I am also pretty sure his throat was sore from the post nasal drip. To top it off, if Liam didn't drink his fluids, we couldn't get his allergy medication in him...
 
When we woke up Monday, Liam's eyes were completely pasted shut with nasty green gook. Poor kiddo... The doctor told us it was definitely related to allergies, not bacterial/viral or contagious. So now we add 2 eye drops to the regimen 3 times a day for a week. The fun continues! By Monday night I resorted to letting Liam drink from a straw....I know, I know, it increases his risk of aspirating. But we were in a catch 22 between him not getting any fluids/medications- or maybe putting him at risk for some aspiration. Well, the straw didn't even work... out came the syringes. He was not happy, and mommy was really not happy since this really increases his risk of aspiration. By Tuesday am, Liam was extremely wheezy and had a croupy cough. I was able to clear it up mostly with albuterol but took him to see the allergy/asthma doc just to get her perspective.

When I was telling her about the prior week of events, I really focused on the fact that he stopped drinking from sippy cups/straws etc and I HAD to use a syringe to get his meds in him....expecting her to explain that this will exacerbate his asthma.....but she didn't. She told me we did what we needed to do and that is exactly what she would want since he needs his medications- he didn't seriously aspirate because his lungs were all clear in the office. I mentioned we DID sleep with the window open just one night since we needed a new air filter. She just looked at me, and her jaw practically hit the floor....oops! She told me NOT to do this again. Liam left with a new prescription for another 10 days of Biaxin as well as an allergy nasal spray to give him extra coverage when he gives us trouble taking medications. I was also happy to hear that once Liam turns two he can take a dissolvable allergra tablet!

We have had him on the medications as well as more nebs during the day. and immediately put the new filter in with AC on! Little man seems to be doing SO much better already! That's all for now, hope everyone is doing well!! Love to all!

The definition of motherhood

The definition of motherhood can be summed up in one simple word: Love. Love that is infinite, unexplained, and indefinite. Why am I telling you this? Because something amazing has happened in the past two weeks in our home. Since we have found Liam was aspirating and have been thickening his liquids, he has yet to have even a little runny nose. Liam has not gone this long without getting congested since he has been born! It has been 16 days, and the change in our miracle baby is unbelievable! Now that he is less congested, and breathing easier, Liam has begun to communicate! My husband and I were hesitant to discuss the matter for awhile since we didn't want to get our hopes up or jinx ourselves, but it is very apparent at this time that a transformation has taken place. Just to give you a brief idea of what I mean, I will share about Liam's bedtime routine last night. I took Liam up to his room and changed him into his PJ's, and when I began getting him off the changing pad he became upset. I asked Liam, "what do you want?" Now before two weeks ago, I always asked Liam this question, but he never responded,...he knew what he wanted but was not communicating. Last night, Liam said "boc." I knew immediately what he wanted! Sometimes I let Liam play with the wooden blocks on his shelf that spell out his name, in order to occupy him while I am changing him, etc. As soon as I pulled two blocks down for him, he was content, and I rejoiced that we had a successful communication. To be honest, I wanted to cry like a baby! Next, I was rocking Liam for a few minutes to settle him down and reading him a book. All of a sudden, he said very clearly "down" and wiggled around to get down! I was amazed! I eventually got the little man to sleep, and he slept through the night with no problems.

This morning we had Liam's second feeding session with our Occupational Therapist from Good Shepard Rehab. Our occupational therapist, Gal, is amazing and comes to our home which is super convenient! We initiated feeding therapy to support us in our efforts to prevent Liam from aspirating while he is eating. The difference between last weeks session and this weeks session has been amazing. Last week, Liam was shoving food in his mouth, "pocketing it" in the sides of his mouth, and chugging from his sippy cup. While we were trying to coach our 15 month old on swallowing before getting more food and drinking in between bites of food, he threw wild tantrums and flung his sippy cup across the room. Needless to say, last week was very overwhelming! Gal explained Liam may have some sensory issues in his mouth, this means he may not "feel" the food in his mouth. With everything going in the right direction lately, this weeks session was a HUGE improvement! Liam took one piece of food at a time, and Gal's distraction techniques worked like a charm. Liam didn't pocket food, didn't throw tantrums, and was chewing his pieces of food up very well! One of the big changes that is making all of this possible is that Liam is better able to communicate! We have been trying for months to get Liam to communicate with sign language, since we weren't getting anywhere with words. We have been working on signing, "more" and "all done." Today, not only did Liam say "more" but he also used perfect sign language for the very FIRST time! I am so full of joy, and love for my little man that I am not sure what else to write. I have been watching Liam "struggle" since he was 11 months with communicating. I know all parents go through this...but I knew how smart he was and there was something holding him back- I cannot describe the joy I feel when I see him successfully communicating and the satisfaction that gives both of us, but also watch him develop and grow into the awesome little man he is!

For now, we will continue with speech therapy, feeding therapy, as well as physical therapy. We have Liam's annual review with Northampton County at the end of May, so we will see where things are at then. Our soonest appointment to see Dr. Kuchinski, Liam's developmental doctor, was the end of August. I was able to get us in to see her sooner in the feeding clinic the beginning of June- so we will see what her take is on all of these concerns.

Before I end, I want to reiterate that although we are making GREAT progress, we are far from done. In between writing this blog post, Liam's late am snack time was a complete debacle of tantrum throwing, pocketing food, and chugging milk. We have a long road to success, but I am so incredibly optimistic...all I feel is "love." My love for Liam is enough to jump any hurdle, climb any mountain, and overcome any obstacle, and I know we will get through it one day at a time. My little man is so amazing!

I hope everyone enjoys the beautiful weather, I will be out fundraising! Love to all <3

Hidden Obstacles

Hi everyone, just wanted to give a quick update. We have been extremely busy with doctors appointments this week. Monday, Liam and I reported to the Lehigh Valley Hospital for a test that would check Liam's swallow function. Our little man was strapped into a booster seat with large Velcro straps, and was a complete angel through the entire test. The test was very interesting, Liam had to swallow foods and fluids with barium and on xray the doctor and speech therapist were watching to see if the food went down the correct tube. Unfortunately, the test showed that Liam is silently aspirating fluids. What this means is that when Liam is drinking, some of the fluid is entering his trachea and going into his lungs. When this happens, Liam looks completely comfortable.... there is no gagging, coughing, or choking - so one would never have any idea this was happening. The good news is that the solid foods that Liam was ingesting went down the correct tube into the stomach. When it was discovered that Liam was aspirating, the speech therapist added a thickening agent to Liam's drink so it would be easier to swallow. Once this was done it seemed that Liam had an easier time getting the fluids down the right way.

So what does all this mean?

Basically, all of us aspirate some of the time and it will not affect us... the severity of the issue depends on how much and what it is we are aspirating.... and if we are able to work it out, or cough it up.  However, for Liam these results are "abnormal." There could be several different reasons for this problem. Of course, swallow function can always be related back to neurological function. Since Liam did have a brain injury at birth a neurological deficit cannot be ruled out at this time. We have spoken to our neurologist, and she has told both mommy and daddy (more than once) that we should not be too concerned at this time because there could be many other reasons for this issue. Some of the other reasons could be immature GI tract, as well as reflux issues, and even possible unknown allergies.

What is the big concern?

We all know Liam has been getting sick frequently throughout his first year of life, and we have been told that this could possibly be the culprit. After speaking with our asthma/allergy doctor, pneumonia is a huge risk factor, as well as damage to the lungs. We are hopeful that will be able to continue to prevent aspiration until Liam is older and has better coordination, or he learns new behaviors of eating, which I will explain more about later. In addition, we have been told that Liam's wheezing and asthma may have been largely due to this aspiration.

What happens next?

Today, we met with Dr. Paul, the pediatric GI doctor at Lehigh Valley Hospital. Dr. Paul feels confident that with feeding therapy as well as speech therapy Liam will completely overcome this hurdle. Some of the things we learned were that Liam should avoid drinking out of a straw, since this makes him work harder and may be too much for him to concentrate on while breathing, chewing, drinking, etc. Liam also often fills his mouth with food to the point that he looks like a chipmunk (it is somewhat funny but at times concerning) and our doctor is assuming that Liam may have some sort of discomfort with swallowing which could be why there is a delay. Liam will be put on a trial of reflux medication to see if this will deter this eating behavior. Liam also chugs mostly every drink you put in front of him. We have been trying to break him of this habit, but it has been a challenge for us. We are hoping that feeding therapy will assist in this process.

Coming up....

In about a month we will be having what is known as a milk scan completed, in which we will for sure confirm that the thickened fluids are effective for Liam, and also this will look at some of the anatomy of his esophagus and be able to look for any reflux that might be occurring.

In the meantime we will continue with thickening Liam's fluids, and work with feeding therapy for a few months. Hopefully once Liam is a bit older the next swallow test will show that he has fought his way through yet another obstacle in his short life. Our little fighter is such a happy, healthy boy and this continues to remain our biggest focus! We are going to continue to incorporate these tests, therapies, and changes as naturally as possible, as to not interfere with the amazing, chaotic, adventures of toddlerhood : )

As for us, this was all a ton of information. I hope I summed it all up pretty well! We will keep you posted! Love to all and Happy Easter!

Latest on Liam

Hi Everyone! Liam and I had a very successful, busy day! We went to see Dr. Ververeli, an allergist through Lehigh Valley Hospital to get a second opinion. First, when we got into the office, the setting was very warm and welcoming, the office staff was kind (even though they were busy) and the toys were awesome! Even though we waited an HOUR, the wait was well worth it. This experience was completely different than our first visit with Dr. Isreal. Dr. Kathleen Ververeli (http://www.lvhn.org/find_a_doctor/profile-750) explained that Liam's previous allergy testing was most likely inaccurate - and after ONE glance at him said to me "he definitely has allergies." I explained why I wanted to see her after seeing Dr. Isreal, and she told me she loves kids- Liam and her had a great visit! Liam has had some thick green buggies the last few days, and if we don't stay on top of buggy sucking the little fellow, it can get kind of nasty (sorry if this is TMI.) Poor little man was wiping his nose and rubbing his eyes most of the visit, and this was WITH giving him his Zyrtec. Dr. Ververeli did a very thorough health history herself, which makes a very big difference to me as a nurse and a mom. We came up with a plan to increase Liam's zyrtec to twice daily and his nebulizer will be doubled in dosage as well. Liam needed to be put on an antibiotic, as we discussed that he seems to have several sinus problems and could possibly be experiencing sinus infections. I also shared that Liam had some moderate wheezing yesterday and required albuteral, and that I was very anxious about the upcoming spring. Her response was, "we can't protect his breathing, if we don't get control over his nose." Also, Dr. Ververeli agrees with my point of view that children should not live in a bubble, she told me that even if Liam was allergic to our boxer that we shouldn't get rid of our pet, but allow Liam to be exposed to her and he would gradually become desensitized (while symptoms are controlled). I know some may think this sounds crazy, however, I am allergic to grass and grew up running cross country....I really believe that eliminating all of the things that bother us is not the answer, definitely not in Liam's case anyway. At this point in time I thought to myself, we are staying with this doc - she gets it! She was happy I was a nurse because she knew I understood all of the information she was giving me... not that she would not have explained it but he was able to give me a kind of short hand version. We are still going to go forward with some more testing for Liam's immune system which will include a blood rest to rule these issues out. I was also informed that research has shown many kids with similar issues as Liam are suffering from gastric reflux, which can cause chronic coughing. Liam was treated with Zantac for a while as an infant but grew out of this, however, our doc feels it would be most beneficial to rule out any swallowing issues as well as reflux issues- so this means more blood work and tests, and possibly trialing some reflux medications in the future. I feel comfortable with the plan, and am confident we will get down to the bottom of this! I love that I was able to have a conversation with a down to earth doctor! I will let you know more when we have some info!

Next we went on to see Dr. "V" for Liam's 15 month well visit! I explained the plan for Liam's allergy and asthma treatment and he was completely on board. Apparently I am not the first parent to complain about Dr. Isreal, Not surprising! Dr. V feels Liam's issues with sleeping through the night are due to the  introduction of nightmares at this age, which is completely normal. Liam was still able to get his 15 month vaccines, which included a very exhausted toddler and lots of screaming, Liam could barely stand up by this point since he had not had a nap. We reviewed Liam's milestones, and discussed his progression with speech therapy. Liam's next appointment will hopefully *fingers crossed* be in three months.

We were able to get our little guy out to see the Easter bunny this weekend and also to the park. Liam's personality is just.....well I guess awesome is the only way to describe it. He is SO well behaved, smart and strong! I just don't know what we would do without him. I am loving every minute, and trying to take it all in before another phase begins.

Today was a very long day for both of us since Liam did not nap and decided to stay up until 8pm, so I apologize in advance for any silly punctuation or other nonsense!!! Until next time, hope everyone soaks up some lovely rays, and enjoys Easter!!! Love to all!

Toddlerhood: the age of injury

Hi everyone !! We have been super busy lately, when you have a toddler it seems like you are constantly running, wait ... You ARE constantly running ... After them! Liam seems to have become a track star and our living room is where he does he laps, I absolutely love it! The strength and will of our little man makes my heart melt- he is very "strong willed" and when he wants something he just won't give up! Our gate at the bottom of the stairs has become a contraption for him to hang from, his crib has become a new climbing adventure, and we finally have gotten outside! Liam has been playing in the window for months, and the look of awe on his face when we take him outside makes me so happy! I am loving how much his stage of exploration is satisfying him, and I want to let him get in as many adventures as possible- so happy the weather has started to cooperate! Unfortunately, with this amazing phase of inquiry in his little mind, there is always danger looming. The other morning I was attempting to empty the dishwasher and Liam thought it would be fun to play with the silverware basket.... Which I thought was cute until he went running and began sliding the basket on the floor- and not long after the basket got caught and Liam's momentum kept going.. Somehow he slammed his mouth on the edge of the basket. Oh, the screaming and mouthful of blood was so painful- I have been around blood plenty as a nurse, but now it's different with the screaming coming from my soon to be 15 month old. As a mommy you want to kiss the injury away- but I know these things are important parts of his "growing up" and I am trying to take them in stride. Liam has now had about 3 fat lips in the past week, and he hasn't been much interested in food not that I can blame him, which leads then to him not sleeping well. I don't see this phase slowing down, in fact I am sure we are just gearing up!!! This weekend we attended the Lauren's hope butterfly ball and it reinforced how lucky we are to have our little miracle and  couldn't be more blessed!!!! Love to all!!!

Allergy Testing and Bedside Manner

Hi everyone, just wanted to let you know how Liam's allergy appointment went today.  We had to take Liam off of his Zyrtec for a few days so it did not affect his allergy testing. Over the past few days we have gotten a chance to really see the difference it makes, and its really amazing! Within 24 hours of not taking Zyrtec, Liam had a terrible runny nose and eye buggies around the clock, and became very congested. Over the past few days, he hasn't been sleeping well and has been much more fussy than usual. I was happy when I woke up this morning to get this testing out of the way! So we went on our way to meet Dr. Isreal, although the staff was organized and polite- there was something....sterile about the office. I felt as though there was not one person that was enjoying their job, and I know it sounds silly but it's important to me that you at least try! Granted, our appointment was at 9 am on Thursday...but still, everything had such a generic feel to it. Overall, I was not impressed with Dr. Isreal. As a nurse, it bothers me when doctors have terrible bedside manner. I mean I wasn't trying to dress to the nine's this morning, I threw my hair back, grabbed a sippy cup and off we went. But when you can't even fake a sympathetic smile after hearing what Liam has been through??.... it gets to me. I mean LOOK AT HIM! ... here is he - sitting on the floor of your office, playing with the baby laptop and giggling.....and I am in the middle of telling you that he was born NOT BREATHING with apgar scores of 1,3,6, experienced neonatal seizures and underwent a breakthrough treatment (the FIRST) in the Lehigh Valley....and you don't even blink -- seriously? As a nurse, this is such an insult. In every job we have, compassion pours out of us. It may not look the same, but each of us has our own unique way of connecting with our patient. This is why we continue to be one of the most trusted professions, and I firmly believe that it is not recognized how hard that is..even if it does come completely natural to us. In one day, we can celebrate birthdays, congratulate victories over disease/medical conditions, fight with the toughest cancer patient we have met thus far, and hold a hand for a dying family member- it is exhausting...but no matter what we are always 100% present in the moment. I have had patients come back and visit on the floor just because they missed a few of us that took such good care of them ...I had a patient ask me once when I was working my last shift, "what am I going to do without you, I mean I know they are good - but they are not you.." I told my patient that she would be okay, I didn't perform miracles, all I did do ... was my job. I look you in the eye, I am honest with you. If I don't have the answer I tell you- I don't pretend to know or tiptoe around it, if you ask me a question I am going to give you the answer that will best benefit you- whether it is what you want to hear or not, but I am gentle about it. I pour my heart and soul into every moment with my patients, whomever they may be, dying sick or young surgical prison inmate on a med surg floor. Honestly, today it was hilarious once I told Dr. Isreal (right before the appt was over) I was a nurse - he really perked up! I wanted to say, oh! now maybe we can have a real conversation? UGH! In my opinion, the highest quality in a doctor is one that can interpret the same information to people in all different levels of understanding....and in my career it has been rare to find. Still, I have to say I agree with Dr. Israel's plan for treatment, given that Liam's testing came back NEGATIVE! That's right, he is currently NOT allergic to dust, mold, CHLOE, or milk/nuts/ eggs etc. You are probably asking yourself the same question I did-- then why is the Zyrtec helping? Dr. Isreal explained that Zyrtec can treat non allergic rhinitis......so now the next thing to rule out is immunologic disorders. My plan is to take Liam  to see Dr.  Ververeli on 4/7 for a second opinion, who is a respected pediatric allergist I have heard wonderful things about. I want a doctor who looks at my son for the miracle that he is. I know that might sound crazy, but hey- that's where I am at....if you are in the medical profession you should consider yourself lucky to work with this little man, and I want....no, no I DEMAND a doctor with half decent bedside manner. My child is not just like every other pediatric patient you see, and no parent should EVER feel that way. This child is there for an appointment because they are sick, they have a story, and you should be interested in every detail....in my opinion, if your not - it's a waste of time! I am adding in a picture of the little munchkin's back tonight before his bath -- no welts, but you can see they tested him for a number of things. I have to say, it was horrid having to restrain him on my lap, it broke my heart- no it shattered my heart into a bazillion pieces. He couldn't understand why Mama would hold him down like that and he was getting pricked -- oh the tears flowed for a bit. Luckily, the office had a lollipop and the sugar quickly made the experience worth the trip! I am glad it is over with and ecstatic that Liam was able to take Zyrtec tonight! Tomorrow, we sadly will be saying goodbye to Liam's caregiver in the young toddler classroom. Miss Alexis is leaving for another position in Olympus, I am so happy for her since she is such a bright girl -but I have a heavy heart since I am not ready to lose her. Liam absolutely lights up when he sees Miss Alexis, and we have built such a great relationship that it is going to be hard to change - whoever takes her place will have huge shoes to fill. I guess that is just one of the trivial trials of mommy hood that I have yet to fully accept. I have been insanely busy but will try to update as much as possible on our upcoming appointments. Love to all and Happy Spring!

Incident reports and sweet potatoe fries

Hi everyone! The good news is that we think the Zyrtec is helping a lot! The bad news is that Liam has another ear infection. This time Dr. V put him on Ciprodex ear drops since he feels the tubes are open. Little man is very fussy with this one, so Dr. V did a very thorough check on his tummy, throat and diaper area to see what else could be bothering him.... even Dr. V has come to learn that "Liam isn't a big complainer."  I know it cannot help that molars are making their way on in! Dr. V also instructed us to make an appointment with an allergist as soon as possible, since a 4 week wait is not ideal, Dr. V told us to contact Dr. Isreal, who was able to schedule us for next Thursday. I am excited to see how it goes since we will get the results right after the testing. I was hesitant to have Liam get skin testing, when I had this done as an adult I remember it being particularly uncomfortable, however, I was assured that the skin testing on babies is barely felt. More on this to come!

Liam had his second speech therapy appointment today at daycare. I was excited to hear how it went. When Liam was having problems nursing we were told he may be “tongue tied.” Babies that are tongue tied sometimes struggle to stick their tongue out, and often have trouble nursing. There is a surgical procedure to correct the condition, but Liam did not need to have this done. Kristen assured us that Liam can stick his tongue out, and she doesn’t feel this will present an obstacle to his speech development. Overall, we feel that Liam’s babbling is heading in the right direction. We LOVE when he says “UT-OH” when something falls on the floor.

Liam’s caregiver had to fill out an incident report today. Liam has had several of these since starting daycare, and none have been serious. The funniest one I can remember is when Liam was playing with a xylophone and poked himself in the eye with the drum stick! I was not too concerned at first, but when I was told Liam fell and hit his face on a chair leg I was a bit alarmed. I was told he had a nice bruise above his eye….but when he came through the door and I saw his big smile along with the swollen lump above his eye, all I could feel was pride for our little warrior. This evening after dinner we took Liam out to enjoy the warm weather – of course during this adventure Liam fell on the blacktop and landed on his palms….without even a wince our little man got up and just kept going. In just 14 months, he has enlightened me, and taught me lessons about life that I never would have learned without all of our experiences together. I am so proud to be his momma!

In the last few weeks, we have been having trouble getting Liam to eat any vegetables. Even if I mix them in with other food, he will find a way to spit them out! We were excited to discover that Liam LOVES sweet potato fries! I know – it doesn’t replace veggies- but, it’s a nice option for variety between the crackers/cheese, spaghetti/meatballs, raviolis, yogurt and other snacks!

We found Liam an adorable outfit for the butterfly ball which he will also wear for Easter, and we can’t wait to show him off! Love to all!

Latest on Liam

Hi Everyone! I just wanted to give a quick update on how Liam is...the good news is that he didn't have another ear infection! Unfortunately, he was running fevers and the doctor checked him for strep....the rapid swab came back negative, but given his symptoms and fever the doctor started him on amoxicillin. Luckily, whatever it was that he had was treated with the antibiotics, thank goodness since his Tmax was 103.8! The little man was pretty miserable for a few days, but now fevers are gone and he is back to daycare. His first day of speech therapy was supposed to be 2/25, but we had to postpone, so more on that to come later. As far as his physical therapy is concerned, Liam is going to be monitored on a monthly basis for now, which we are thrilled with! Even better, Dr. V. agreed to trial Liam on Zyrtec since we won't be able to get to the allergist until 4/7, we think we may even have noticed a little bit of improvement already with less runny noses etc. On the other hand, Liam's asthma has been acting up over the last few days....it felt like once his fever came down....his wheezing acted up- or vice versa! I always listen to his lungs myself now to be sure, which originally I vowed never to do! I originally had a ton of mixed feelings regarding weather my background as a nurse ultimately affected how everything turned out with Liam's birth.....was I over or underdiagnosing myself, was I trying not to act like the "crazy patient?"....was I trying to steer my own healthcare and made bad decisions? I could go round and round for hours.....so when Liam came home and then had trouble breathing I decided to just be a mom and not get out the stethoscope, I had never listened to little baby lungs anyway right? Well.... this feeling SOON wore off as every doctor would say something different and every time we went to the ER we were given different information. I remember one time when we were sent home from the ER I even called ABC's triage nurse (on the weekend) and told her what happened with our visit to the ER, and how Liam looked to me, and then I even held the phone up to him so she could hear how loud and fast he was breathing and how terrible it sounded! She agreed with me that we shouldn't have been sent home too- we were getting mixed directions about how much albuterol to give etc. Then, I have the on call doctor contact me (as we are driving BACK to the ER) only to be told that as long as his oxygen levels were good they would probably not admit him! Eventually I came to the conclusion that the stethoscope would come out- and really I am quite comfortable listening to him and I actually feel SO much better when his lungs are clear after his albuterol nebs. We are still super hopeful little man will grow out of this and it is just baby asthma! In other news, we are really hoping that the weather clears up soon so mommy can get out and start fundraising for the march for babies walk on April 27th, and also exercise! I am super excited to get the little man outside to enjoy the park across the street, I am hoping to invest in a bike trailer the little man can ride in! We are really looking forward to spring! I recently was asked to precept a new health coach at work which will require some commuting into the office 1-2 days a week until mid April, so if you don't hear from me for a bit that is why! Love to all of our family and friends, and here's to staying warm with snow on the way!

Rolling with change...

Since Valentine's Day, we have been busy bees. This past week Liam wasn't the only one that was recovering from a cold. After attempting to seek treatment for my sinus infection at the local urgent-care since I am currently in between primary doctors, my antibiotics/steroids didn't work and I ended up in the ER with some rare ear infection known as bullous myringitis. Basically, I was in terrible pain, and I was told I had blisters on my ear drum that were bleeding. I was given numbing ear drops and sent home with a new antibiotic, and Percocet. I have finished the antibiotic and have thankfully not needed any pain medication....however, I am still unable to hear completely and have been told it can be up to a month before my hearing may be fully restored. Looking back, I cannot say I am surprised. I have not been focused on my own health, in fact I have pretty much been blatantly ignoring it. Lately I have been caught up in working on house projects in addition to appointments with Liam, let alone stress with work. I have found out recently that I will be placed under new management at work due to a reorganization. I find that it is odd that this is stressing me out, when I was on the floor or in the field changes in management were constant. However, they never changed my day to day responsibilities. Now that I work in a corporate position, feeling connected to your boss is a huge deal, especially when you have a child that seems to be sick all the time...being reassured that the work would always be there waiting was a big deal for me. I was very resistant to this change, I am at a point in my life where for one second, I just want one of the staples in my life (for the past year anyway) to remain constant. Well, I am not going to get what I want, and as always have talked myself into rolling with the changes. We will see where it goes....I have been told that I am strong in my position and I will do well, although it feels painful for me to have to leave the team I have become so close with. Anyhow, I have now met with a new primary physician through Lehigh Valley, and she is right up the street from our house. After everything I have been through with doctors, it is hard for me to like them. My first meeting with this doctor went great! and I am hopefully on a new road to better health!

In other news I took Liam to the ENT on 2/19. First, Liam's hearing test came back normal! I was so happy, and now we can move forward onto other issues. The PA at Allen ENT told me that sometimes when babies have recurrent infections after tube placement the actual tubes can be the cause of infection which is why sometimes they need to be swapped; however, since Liam always presents with multiple symptoms and also his tubes looked patent and dry on this day- replacing his tubes will not be the solution for him. (*HAPPY DANCE*) I was given the name of a pediatric allergist, and I made the appointment first thing when I got home! Unfortunately, we will not be able to be seen until 4/7. In the days following the appointment, we noticed Liam starting to rub his eyes, and also his ears began to bother him.... and then we started to see that familiar drainage from his eyes and nose. Today, Liam was not himself all day, he seemed fussy most of the day and just wanted to be held- and smiles were no where to be found. This afternoon his temperature was 100.3, and we gave Motrin and crossed our fingers that this was teething. After we put him to bed, Liam was making some strange sounds after we put him in his crib and although his breathing was alright our little man was burning up. We caught his fever at 102.5, and gave him some Motrin and will see what the doctor says in the am. He has been off of antibiotics for less than a week this time. In the meantime, lots of fluids and sleep and I will update once we have a plan.

On a more positive note, we are happy to say that we have raised some money for the Lauren's Hope Foundation. Olympus had a "snowman charity fundraising competition", and we won! Out of eight other charities, employees at Olympus voted the most on our table where we had set up an educational poster about LHF and Liam's story, as well as a homemade snowman wearing Liam's cool cap. The winner was announced Friday night at Revolutions in Bethlehem, during a happy hour for the company. We raised $1,000 and also a camera to auction at the Butterfly Ball! Liam had a blast dancing to the music the band played, and also posed for a picture next to the big trophy! We continue to strive to raise awareness for this amazing foundation, and to get their name out into the community! That's all for now, we all need some much needed rest!

12 month vaccinations, our best friends, and worst enemy

Hi everyone, I wanted to give you a little update on Liam, and share the adventures of our Valentine's Day. The husband and I were both lucky enough to take off of work on 2/14. Of course, we wanted to spend it together as a family. I commented to my husband on Friday, that this was our 10th valentines day together....where does the time go??  Pre Liam Vday's were filled with all kinds of romantic things including gifts, and going out to fancy places etc. This year, my husband didn't get me roses, and honestly- I couldn't care less. Between last year and this year, Valentines day, just like every other moment of our lives, is now focused on spending time as a family and cherishing our little man. The day started with us venturing to King of Prussia to see our neurologist, Dr. Boo. We were on the road in enough time, however, we heard on the radio that there was an accident on the turnpike that shut the road down. We decided to get off at Lansdale, in order to avoid being late. We were still going to be about 15 minutes late, and I decided to call the office and let them know. Before I could get through to the office, they were calling me..... I figured this couldn't be good. We were told that the Dr. had gotten stuck in the traffic from this terrible accident and would not be able to make our appointment time as the road would be shut down for some time. We decided we would stay in the vicinity for the morning to see if we could hopefully get an afternoon appointment. Luckily, we got to stay with some friends that were only 20 minutes away. After about 2 hours, were we called and told the doctor was able to get to the office and we could have a 12:30 appointment. I was so happy we were going to be able to make the appointment!

Dr. Boo gave Liam a great report. I love Dr. Boo is because she is very experienced with brain injuries, but she is also a parent....so she is able to put everything into perspective for us. Our original neurologist gave us scary stats and basically told us even though Liam seemed great only time would tell, as a parent this is so scary to hear when all you want is just a little reassurance. I will never forget the way he approached us in the NICU- he barely touched my baby (you call that an exam!!?!)  and then told us his EEG results came back abnormal....I don't remember anything after that because I completely lost it. We weren't told what it meant, the doctor gave us no reassurance that Liam's outlook could improve, and then we were sent home with Liam on Phenobarbital. At our follow up the doctor had the guts to come in and ask us what medications Liam was taking... (Umm how about the one YOU prescribed after his birth injury and seizures and abnormal EEGs!!!!) My husband and I were stunned that this doctor couldn't even review a chart before sitting down with us = infuriating. (As a nurse, I don't know why it surprises me I have seen it a million times, but it just wasn't acceptable for MY baby!)  I came out and asked this doctor if he had ever cared for a baby with Liam's condition, his answer was no. Liam was the first baby to go through the head cooling process at LVH, so I cannot say I am surprised.....that was the last time we took Liam to see that doctor.

After Dr. Boo checked Liam out her exact words were, "he is almost out of the woods, but I would like to continue to see him." What Dr. Boo then explained is that it will be important to watch Liam over the next year, and possibly longer, because the myelination process in the nervous system will not have completed until that time (basically this has to do with the signals in the nervous system that are still developing.)  I hate to be technical, and Dr. Boo explains it SO well, but basically, until this process is completed, it will important to monitor Liam neurologically. He will not need anymore EEG's or MRI's unless there are changes, but Dr. Boo would like to see him again in 3 months.  After a physical assessment Dr. Boo felt Liam has no tone issues, and she also feels that his verbal babble is great but encouraged us to go ahead with speech therapy. Every little step in the right direction makes me SO proud of our little warrior!

Next, we decided to enjoy the day and ate lunch at Cheesecake factory. We had a great time, I think Liam enjoyed my pasta more than his chicken quesadillas. Before we knew it we were off to the pediatricians office for a follow up with Dr. V.

Dr. V. explained that Liam's ears look great, however, we brought up our concerns about the fact that he has needed two antibiotics since the tubes were placed. Dr. V. explained that the first set up tubes are always plastic, so if these end up not working, tungsten metal tubes can be placed. *We are hoping Liam doesn't need to have his tubes replaced!*  I asked Dr. V. about allergies. He explained that if the ENT agreed, we could trial Zyrtec to see if this helps with his constant congestion which leads to the ear infections. I was SO happy to hear that he was on board with this! Also, by Liam's 15 month appointment we could hopefully test Liam for allergies. Dr. V. explained that babies cannot be tested before this time because they will still have some components of the mothers blood, which could make the test very inaccurate. Before leaving for the day (since we were the last appointment) Dr, V. held Liam for a few moments, he truly does care about our son so much!

Finally, the nurses came in to give Liam his 12 month vaccines. We didn't get these done on the last appointment since his birthday party was the following day. I didn't realize this, but Liam was going to get his pneumococcal vaccine which he had before, but now also two new vaccines including the MMR, and the chickenpox vaccine. I have never questioned any vaccines that Liam got. I originally had them wait as long as they could to avoid any seizures, but once we were through that it was smooth sailing. I was vaccinated for most of these things, and my husband and I agreed Liam would be also. Originally I didn't think it was going to be all that bad, probably just like the other times he got vaccines. But oh! was I wrong. Thank goodness my husband was holding him, because he screamed the entire time he was getting injected with all of them. He screamed bloody murder. I couldn't watch, I don't think I was even breathing, it felt like a year before it was over! There were 2 nurses in the room, and one told me, "these ones do sting a lot more than the ones he got in the past." When it was finally over, I realized I had squeezed my eyes shut so hard I was tearing, the nurses handed me a tissue and told me "were all moms, we get it."  Just then, the receptionist came into the room, she told us Liam had the saddest scream she had ever heard...the staff then left to go get our little man his FIRST lollipop, which instantly made him smile! It didn't last long before it ended up on the ground, but at least it served it's purpose. We didn't have to give Liam Motrin once over the weekend, when I bathed him I noted the bumps on his arms from the shots...but nothing seemed to bother him. I was happy the worst part of that was over!

Hope everyone had a wonderful Valentines Day!!!!

"MOM!"

This morning, while sitting at the highchair eating oatmeal, Liam looked at me and said "MOM!" I almost cried, I have been waiting SO long for this. Since then, Liam has been saying many "momomom" chains, and I love, love love love it! Liam has been much more verbal since starting in the toddler room. He makes different sounds and is babbling a lot. I love to listen to his baby talk.

This morning, Liam's first appointment was with the NICU pediatric rehabilitation clinic. This appointment is where Liam will be assessed by a physical therapist, and then the results will be sent to the NICU doctors, and we will meet with them in March. I really appreciate the efforts of our follow up program to put the entire picture together. At Liam's 6 month follow up, he scored a 95% on his skills at that time. Today, he did amazing as well. There were a few things the therapist pointed out that I never would have even thought of, such as the way he sits in a W, with his knees in front of him and his feet bent backward behind him off to the sides. The therapist explained this would be something to watch, as Liam should be sitting in many different positions, in order to use his core muscles. The therapist also set up an obstacle course for Liam which he aced. First, Liam kicked a ball around the hallway, which helped show how fast he could go, and how coordinated his movements are. Liam then had to walk over an uneven surface, where he struggled a bit, before showing off his strength by climbing "uphill" on an incline while holding the therapists hands. After that, Liam even was able to go up and down some steps (while holding hands)! Liam even attempted to walk on a beam, this skill didn't go so well- however, the therapist was showing me what he is now capable of with assistance, and will be able to do independently on his own in the next few months. So proud of our little man! While our therapist said Liam was doing phenomenal, she advised that it would be best for us to have Liam monitored monthly if possible, since the next few months are huge for his development. With this great report, I whisked him away to our next appointment.

Now we met with a speech therapist for an evaluation. These evaluations are painstaking. It is so hard to score your baby on what they do or don't do. Babies skills change all the time, they come and go, they "take breaks" at times when their is other monumental stages of change occurring. Liam waved "bye bye" consistently for a month or so, but this stopped a week or two ago and we haven't seen him wave since. Justin and I both got to be at this eval since it took place at Liam's daycare, which makes me so happy because we can both put our input of the last few weeks. It might sound crazy, but some days the difference in what my husband and I see in our son is like night and day, depending on who takes him in the am or pm, meal time, diaper time, play time, etc. There are days when I am getting ready to go to bed thinking about the constant crying and tantrum throwing that I say something to my husband like, "Oh my goodness I hope tomorrow is better!" My husband will look at me and say, he was great with me today when I had him. Because of this, it is always helpful to have the input of both parents to complete the evaluation. When the therapist asked us if Liam waves bye bye, we looked at each other, and just told the truth. We know he can- but neither of us has seen him do this in at least a week. Right now this development has gotten tucked away for the moment so he could focus on something else. I also made sure to share Liam's background with his ear infections and tubes, etc. After the eval, we were told Liam was at an 8 month speech skill set and that Liam will qualify for therapy. We were told that these evaluations are not completely accurate at this age due to the variability in the scoring. The speech therapist does not feel that Liam is going to have any trouble meeting his full potential with a little extra help! We have complete confidence that our son just needs a little more time. Although he was born full term, being on so many medications, including Fentanyl, Versed, and Phenobarbital during the first week of life took time away from him developmentally. In addition, Phenobarbital is a very strong medication, and Liam was on this for roughly 4 months to prevent seizures while his EEG's were still abnormal. I can only imagine what this would be like for a baby. We were reassured multiple times that there were no negative effects from the medication, but in my heart I felt as though it must be like pulling a blanket over your head! Our little man has truly been through so much, and I know with time he will reach full potential.

I have come down with an awful cold, I tried to get some extra sleep last night after not even being able to get anything in me but warm broth and choking down some mucinex. Today, I was completely wiped out and my throat was hurting SO bad. When I heard my baby boy say MOM it was all I needed to get through the day, I have now officially learned what people mean when they say moms have superpowers. If I didn't have my little man I probably would have spent the day in bed, I really felt so terrible.  After two am appointments, running back to work, somehow purchasing $200 of groceries on my lunch hour, and then covering the que until 9- this momma is WIPED. But I wanted to share my amazing news with you all! Until next time, stay safe and warm! xo

13 Months!

Hi Everyone! Today, our little munchkin turned 13 months...and we are in disbelief! We simply cannot believe how quickly time has gone by. Being a mother has been the biggest honor, I never imagined I could love so much! This little man runs my household and my heart (see picture below!)

Liam has been doing well, his physical therapist is struggling to find things to work on, as he is at a 19 month old skill set (!!) our little man is SO strong : ) he continues to amaze! We are awaiting our speech evaluation and may end up being discharged from physical therapy depending on what happens. Over the weekend, we ended up at the doctors again...for several reasons. First, the husband and I had a little miscommunication and Liam's eye drops were left at daycare so I needed to get more ordered (the doctor on call would not prescribe with a phone call.) Also, I was concerned about Liam's cough- it had gotten worse. However, when I got there it turns out little man had puss building up in his left ear, and the doctor opted to put him on Augmentin to clear up his ear and eyes, the cough I was told would just need to run it's course. Me and my husband had a long talk when I got home, as we expected the ear problems to resolve after Liam got the tubes, and we are concerned about him being on all of these antibiotics (this will be the second round since the tubes alone). Ultimately, we are hoping to get Liam tested for allergies at some point in the near future, as we feel this may be part of the problem. Allergy testing seems to be controversial in babies....so more to come on that topic.

I have been striving really hard to be "present in the moment" this month. I have really been struggling to find a balance between work, keeping up with laundry etc., working out, and spending quality time with my family. I really love blogging because it helps me find this balance. I know this might sound crazy because usually people say social media is part of our distraction.... but when I am able to blog, I feel that I can get everything out, and put the computer away for good! I have removed Facebook from my phone, and this has helped me tons to avoid distractions throughout the day. For right now, I have needed to put my workout goals on the back burner, which really sucks, but since work and family come first that's what happens. When it gets nice out again, the pup and I will be able to get at least 30-45 mins a day outside during my lunch break, and to me that's a great place to start. I cannot say I am in love with my post baby body....but the reality is me and my body have fought some pretty rough battles, so I am just trying to get to a place where I feel healthy, and not focus on the physical aspect so much. I know I want to be strong and healthy for my little boy...and honestly I never had the beach body so many woman aspire to have anyway, so my workout drive is a work in progress.  I have some big events coming up, including the March of Dimes in the end of April in which I am preparing to be a team captain, and in the end of May we are gearing up for the Laurens Hope 5K! These will require some organizing and fundraising.... we have been so fortunate to receive all of our blessings, and I want SO badly to give back all that I can to these amazing organizations which have helped us so much, fundraising and giving back will always be a part of my life! Right now being present in the moment means putting the laundry aside and running around the house chasing my little man into a deep belly laugh, and sometimes letting the dishes sit in the sink and taking care of them later at night...even sometimes the next morning (yikes!). I have found steaming vegetables a very healthy, easy way to prepare some side dishes for Liam ahead of time, so I am very happy about this. Even better, he has been loving the butternut squash I steamed! Little man still has been somewhat fussy, but his appetite is a little better. He slept through the night for the first time in over a week last night, and we couldn't have been happier to wake up feeling refreshed this morning!

It's hard to believe, but I think now I am finally able to embrace the happiness of being a mommy....not that I haven't been overjoyed the last year... it is near impossible to explain....Looking back, the last 13 months have been filled with so much pain, anxiety, and stress that it was hard to truly take a deep breath, and "be present in the moment" to enjoy my little man. When I open my arms, and my munchkin comes diving into my chest to hug me, I feel such a deep love, a connection that I don't know what I would do without each and every day.....I am able to look back and instead of becoming paralyzed by these overwhelming negative emotions from his birth injury, I think WOW! this little man came from ME, and he is SO amazing! I no longer feel so much guilt about what happened, I no longer blame myself, become resentful, and go right back to how things went bad.... (and then get stuck on the fact that I should not still be so caught up in it all!) I have come to a peace about it and am now able to wear a genuine smile withOUT the hopeless sigh accompanied right behind.....it is true that I will always wonder what might have happened if different decisions had been made or I had spoken up more, and my hope is that one day these last doubts will eventually disappear...this is not to say I don't have bad days, I don't know if that will ever be the case. For now, I am in love with the place that me and my family are at, all feels right in our hectic, chaotic, amazing world of toddlerhood : )

25 Things I Love about being the mommy of a toddler

Before you read on, please know that these things change everyday, as Liam Changes everyday. Being a new mom, I am amazed at the discoveries and abilities that take place in just 24 hours, this little miracle never ceases to amaze.... I also want to say that I am grateful for everything this little man does, but these few things in particular lift my soul!

1. The way Liam will always grab my hand when I hold out mine to him, we will walk hand in hand, wherever I lead him.

2. The way he always cuddles on my shoulder when I pick him up.

3. The way Liam cries for me if I have to leave, it hurts, but it is pure, raw, need for mommy : )

4. The way Liam goes running to the garage door when he hears the handle, this makes me melt- I love the bond my son has with his father.

5. The way Liam feeds Chloe when he is in his high chair. He has recently become a fussy eater - very unexpected, but the funnier part is that he thinks we don't know he does it!

6. Liam LOVES balloons. We still have 3 left from his birthday party, even one that talks!DISCLAIMER: Parents- please don't ever leave your child alone with ANY object that has a string, or anything that might be a choking hazard, LOL.

7. Liam LOVES baths. In fact, he tries to drink the bath water sometimes! I can't wait to sign him up for swimming class!

8. Liam discovers something new everyday. Today, he discovered my eyelashes....that one hurt.

9. Liam is starting to LOVE his books. I even created him a "book nook."

10. NO. MORE. FORMULA. and I Don't miss it for a second...we might all be drinking whole milk for a minute, but at least it's a ton cheaper : )

11. I am very hopeful that sometime soon my 23 lb. miracle will be able to CLIMB out of his car seat! He is getting heavy!

12. Liam is starting to cuddle with stuffed animals, and he loves his big brown teddy...too cute!

13. Last night, little man pulled a toy out of his toy chest....one of the little pull-a-long puppies with a string. Liam had never played with this toy before, but a few weeks ago after his birthday party we had a bunch of little kids here playing with this toy...and he must have been paying attention. Liam pulled the toy puppy around the house for about 20 minutes last night. If you would have seen this, you would understand why it makes me so happy!

14. We can play, "if your happy and you know it clap your hands" and "this little piggy!" This age is absolutely my favorite so far!

15. When I go into Liam's room in the morning, it takes him about 5 minutes of rolling around until he is ready to wake up (he takes after his momma) but then he pops up with a huge smile on his face!

16. Liam and our boxer Chloe are BEST friends! When Liam cries, Chloe sits faithfully somewhere near him until he comes down ....Chloe has become MUCH more protective in the last few months, she would do anything for our little man, despite the rough start the first night we brought Liam home....

17. We have LOTS of Lego's, which sat untouched for quite awhile....but now Liam Loves playing with Lego's!

18. Liam's great grandmother had a friend knit Liam a PSU quilt, and sometime soon we can pull this out of the closet and he can use it!

19. Liam loves to play "ball" now....he will throw the ball and laugh when you give it back!

20. Liam takes after his momma, he LOVES cheese!

21. Today, when I picked Liam up from daycare...I went to get his jacket off the rack and Liam held out his arm to help me! Yes, I know....but its the LITTLE THINGS!

22. Whenever I go to Liam's daycare, all I hear is how much they love our little man, how great he is with other kids, how much the other kids love him, and how "cute" he is!

23. I love that I can drop Liam off at kids club at LA Fitness, and he instantly makes 2 girlfriends, he will wave bye bye to me and go off and play well with friends!

24. Liam tries to help momma brush his hair and teeth, and put his shoes and socks on....he also is learning quickly to eat with utensils....although this skill has been a bit messy!

#25. More than anything, (I know every momma has a miracle) I LOVE THAT I HAVE A MIRACLE BABY, AND I GET TO BRAG ABOUT HIM EVERYDAY!!!!!!! <3

Eighteen

18....the number of days since the last time we have seen "Dr. V." Dr. Sanjeev Vasistha, our pediatrician through ABC Peds, has been awesome. We don't go very long without seeing him, for awhile we were taking Liam in for weekly "ear checks." Between the normal daycare acquired illness, on top of his asthma and terrible ear infections, we are pretty much on a first name basis with everyone in the office. They all know Liam, and he knows them, it's sad when your baby is excited to play in the peds waiting room (but they do have some pretty awesome toys!)  I can remember the moment we decided to pick this doctor during our stay in the NICU. It was one of the nights right before Liam was released, and everything had happened so quickly we were scrambling since the original pediatrician we had picked would not be appropriate given Liam's medical condition. We were looking for a doctor that was part of a large practice with OUTSTANDING experience, with open availability and also affiliated though the Lehigh Valley Hospital... as Liam's prognosis was very unclear at the time. This particular night, we happened to speak with the nursing staff about suggestions, and they kindly paged the on call doctor, Dr. Killian. We were very surprised when Dr. Killian not only came during the night shift to come and have a conversation with us about this very important decision, but we were blown away by the fact that he gave us great information and also shared some very personal stories with us. Dr. Killian explained that the head cooling program was very important to him, I won't share the details, but in so many words he explained he knew EXACTLY what we were going through with our baby. As a mother, I cannot put a price on this conversation. Dr, Killian debriefed Liam's case for us from a doctors point of view, and then also from a parents point of view. As a doctor, he of course could not assure us Liam would be "okay"... but after sharing his experience from a parents point of view, he sure lifted our spirits. He also took the time to find out where we lived, and explained that ABC Peds, a large practice, had just opened up a new site with an excellent doctor right down the road from us. This information was priceless, since most practices affiliated with LVH had locations which were in Allentown, a bit of a drive for a doctor we would need to see so regularly. It is occurrences like these that remind me over and over, that although I will never understand it, everything worked out the way it was supposed to...

Liam took to Dr. V. very naturally, and I couldn't have been happier. Dr. V. had great experience, and I never disagreed with his calls. There was one time in particular that Dr. V. instructed us to take Liam to the ER for "fluids" as he had become dehydrated with his fever and stopped drinking. He called the ER to let them know we were on our way. After checking Liam out, the doctors explained to us that although Liam was on his way to being dehydrated, he wasn't "dry" enough to get an IV - we were sent home even though Liam still wasn't taking fluids. I remember the one doctor saying, "sometimes this happens, and when they get thirsty enough, they will drink." This upset me, I knew Liam was very sick and he wasn't going to start drinking. I KNOW MY SON! Liam waited days after he was born to take a bottle, and once he started nothing could slow him down, I knew something wasn't right ....The following day, Dr. V. found out what happened, and called the chief of the ER and explained he was very upset that his instructions were not followed. This is only one of the many reasons why I will always trust Dr. V.  That very night Liam stopped wetting diapers, and needless to say we ended up in the E.R., Liam needed 2 bags of fluid, and then also ended up getting an IV antibiotic for his ear infection.

I was really hoping that our visits to see Dr. V. would be getting spread out more, I thought we had Liam's asthma and ear infections under control. I guess I should have knocked on wood, because Liam ended up with conjunctivitis. As soon as my husband brought him through the door last night, I knew. I know my son, I don't care what is normal for other babies, eye buggies are not his thing, unless he has pink eye. Of course, as always with babies, its NEVER just pink eye...its always 3 different things at once. Liam went down in his crib before 8pm last night (early for him), after being very fussy, not eating, putting out wet green eye buggies and starting with a fever (only 100.5 at bedtime last night.) Sometime around 10, Liam started crying, and as he cried he became more upset then usual, and started screaming. We found him in his crib holding on, as if for dear life, and then we realized...his right eye was pasted shut. The poor little man was scared because he couldn't see at all out of that eye, it was so sad. Once I was able to wipe the nasty gook away, I could already see the puffiness starting- but little man was thankfully already fast asleep now that all was better with his eye. 

Of course this am, Liam's eye was pasted shut again when I went into check on him, I knew I had to call out of work. I couldn't be more lucky to have the job and manager I have. Family is priority, they have met my little man and fallen in love with him just like everyone else! They never give me trouble about taking off or making time up, they know I don't abuse the privilege and I have shown that I can handle making up the lost time. I was able to get Liam into see Dr. V. at 10:20 this morning. Of course, his temperature was a little elevated, 99.5, Liam's lungs were very congested even after getting his normal medication for asthma, and he had started with a runny nose. Dr. V. called in an eye drop for his pink eye, and I was to double Liam's normal asthma treatment in addition to giving him albuterol every 4-6 hours as needed for his upper respiratory infection. For the runny nose we do saline drops and suction 4 times a day. Dr. V. always makes sure to remind me, "one day it will all be better" ... I usually laugh when he tells me this not only because I am still waiting for "that day" when Liam's immune system can beat these little germs- but also because to me in a different sense everything IS already better....compared to what it could have been! Dr. V. has been great about always getting back to us when I have questions, even calling us himself! (Sometimes he even answers the phone at the office which REALLY throws me off!) I really appreciate this as a nurse, because many doctors I have worked with just relay information through their nurses and would NEVER pick up a ringing phone! Dr. V. "knows" my son, our visits never take long, he always remembers about his medical history (HUGE deal!), he always takes the time to hold him for a few minutes, and today he was explaining to the new nurse when Liam didn't flash one smile... "he is usually a very cheerful baby." These are the things that make me smile...as a mom, I couldn't feel better about the care my baby boy gets after all he has been through. At this point we don't even bother with follow ups, Dr. V. knows we will call if Liam doesn't improve. He did mention that I should call if the fever doesn't break over the weekend, even though Liam's ears look good today he would want to check them next week if the fever persisted, just to make sure.

So we got home, and Liam was very fussy. I put cartoons on and for awhile he just dozed on his plush puppy. He wasn't interested in food, water, or milk... I let him snack on bread, crackers, yogurt, applesauce, etc. I can't blame him after all his poor eye was so red (and then the other eye started- go figure)! I ran upstairs to grab the laundry and when I came downstairs my little man had thrown up all over himself! He hadn't even cried, he was perfectly happy, up walking around and playing. He actually seemed to feel better! I am praying this was a single occurrence, and we are not dealing with a GI bug! After he puked, Liam was tired and went down for a nap, which gave mommy time to blog!

I don't know when, but hopefully one day soon the number 18 will be much, much higher!!! Until then, here's to praying everyone in our house isn't puking at 3 am!

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