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!!!!
So happy to hear he's doing well!
ReplyDeleteThanks!!!! <3 <3
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