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!