Well Jax its been about a month since I've written. A lot has happened in the last few weeks. March was a quiet month for doctors appointments (everyone is waiting with bated breathe (well I am anyway) on your genetic test results). But April is set to be really busy, busy. This month we said goodbye to our AMAZING PT (Physical Therapist) who had been with us since you were 4 months old. She got a great job opportunity and we wish her the best. But trust me buddy, you and I miss her so much. Its an aspect to having a special kiddo that many people don't think about. It can be difficult having different people in and out of your house. We have to learn to trust them, and see them as a member of the "team" almost family. You have a speech teacher 2x a week, PT 2x a week and OT (occupational therapy) 1x a week. So that's 5 hours a week just dedicated to your therapy. You and I both become so close to these very amazing people. They have seen you grow and already beat some of the limitations that doctors placed on you. I attribute so much of your growth to their (and your!!) hard work and dedication.
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Something awesome did happen this month. We got to visit with 2 very special friends. The hospital floor that we spend most of our time on is known as ICS. It stands for Integrated Care Service. Basically it means that when kiddos have lots of complex needs that can't be treated by just one aspect of the hospital, this is where they come. All the drs from all the different specialties come to the ICS floor, with one main "diagnostic" pediatrician leading the pack. ICS drs are great and the nurses are some of the best! They are used to complex kiddos and never ever see rare as impossible. They know all your allergies. They order special diapers for you before you get to the floor. Most of them will sign with you and know which side of the crib to approach so you can hear them coming. Well because we spend most of our time here, we have met several other families in situations "similar" to us. Really there is nothing truly similar; other than that you are an amazing group of "medical unicorn" kiddos. But anyway, your previous roommate Avery was visiting from IL and we got to see her and her amazing family! Avery has PWS (Prader Willi Syndrome - click on link for more information in regards to PWS!) and a few other complicated things, but let me tell you, that girl is a rock star! We even got to have Avery's 2 big brothers sleep over. Her momma has been the biggest inspiration to your momma! Her friendship made the longest of your hospital stays something I now cherish. We ALSO got to visit with Caden and his momma!!! She is also amazing. Caden has CP and a connective tissue disorder called Ehlers-Danlos, plus lots and lots of un-diagnosed stuff. (To learn more about their story, click here: Cause Caden CAN.) When I spend time with these mommas, I realize that you and I are not alone. Other people do spend their days fighting with insurance companies, calling out of state doctors and hospitals, following up on research studies done in the back labs of Universities like Harvard and UCLA. All the strange stuff momma does that she never thought she would.
March 26th was Epilepsy Awareness Day. That is a REALLY big deal in our house, because as you know, your big brother Zachary has epilepsy. He was diagnosed when he was 18 months old. It was a bittersweet day for me because I realized you were the EXACT age Zachary was when he had his first seizure. A few of your doctors feel that you and Zachary may have the same "thing" but that it is presenting it self differently. Now we are on high alert to watch for seizures for you. Momma knows that God has this too, though. Plus all the neurologists know better than to give you any seizure meds. If need be, we will try Keto FIRST!! Daddy & I are so blessed with the example that Zachary is for you. He inspires us just like you do. The Lord has truly blessed this momma with some down-right amazing kiddos!
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| We wear PURPLE for Zachary! Like our bow-ties? Visit Seven Hearts a Bowtique! (Yes, its a shameless plug for my friend who's daughter has the PWS. But trust me, her stuff is AMAZING!) |
Well Jaxon, the last part of those letter to you, is the same as last time. We need you to GROW!!! You still have not gained a single ounce. Now, you are not losing any either. But you literally eat almost around the clock. The drs are also very concerned about your chloride levels. They have us "salting you" 4xs a day. They just increased the dosage on the sodium chloride again, because your levels were just as low as before. We are trialing Corn Starch this week, hoping that helps keep your sugars up to normal levels. They took you off the medicine we put you on during February because it stopped working. They had hoped it would last at least 3 months, but 1 month was all they got. It was also causing problems with your vitamin D & electrolytes. So its better that you are off it, now just to find something that works! I know we will though. You know I will keep searching until we find a working solution. Remember that we love you always.
xoxo,
Love Momma
Oh and I almost forgot. Some of Momma & Daddy's closest friends have decided to do a benefit for you. We are beyond blessed and humbled. We are so thankful for them. Thankful isn't enough of a statement, but I will try to do better next time :) Their hope is that this will help us better be able to fight for what you need - to get you to the right doctors, on the right medicines and with the equipment your body needs to be its best self. What amazing people we have in our life Jax!!!
