Are you ready for Miss Aleah to knock your socks off?!?! This week we had 2 clinic appointments: Special Care Clinic and Feeding Clinic. Aleah was discharged from BOTH clinics! :D Special Care Clinic: Dr. R is awesome - there is not much else I can say. She was our first specialist, she was the one to diagnose Aleahs CP, she held my hand through first braces, multiple hospital admissions, lots of feeding tubes, we butted heads over pediasure and she finally came around to my way of thinking and even fought for us to do blended diet in-patient and supported me in doing blended diet through the J. She testified in Aleahs TPR hearing ... we have walked a long road together and she cheered Aleah on every step of the way! We started out seeing Dr. R every 4 to 6 weeks - we spent a lot of time in her office! Alas, our time together has ended as Aleah is stable, all of her specialists are in place, and our Tiny Tot is not so tiny anymore. More than a few tears were shed, but the take away that was communicated to the resident in the room was this MRIs dont tell everything - you cant count a kiddo out just because they look bad on paper - you have to look at the kiddo. well said Dr. R. We love you and will miss you!! Feeding Clinic: Dr. R, Miss J, Dr. B, and Miss C - what an awesome team! What a support system and what a great bunch of minds to have all together in one room ... the ideas fly, the support for Aleah abounds, and this momma always walked out of there knowing that they respected me as Aleahs parent and my opinion was valued. Again, monumental support for blended diet - never a question even in the J. Aleah has the skills - she is capable of taking bites, chewing and swallowing a variety of textures. She is safe with all liquids (in her straw sippy cup). Her brain just cant keep all that stuff together long enough to take more than a few bites and her brain isnt sending hungry signals like it should so she doesnt want to eat - and honestly, eating is not something we have decided to push for at this point. If she is safe to enjoy what she wants as a recreational eater and she can sit at the table with the family during meal time with minimal fuss then it is fine by all of us! In fact, Aleah is doing so well with her current blended diet/feeding routine that she gained an average of 10 grams a day since May (and we honestly think it was more than that b/c in May we weighed her with both feet in casts!). That is her best rate of gain EVER!!! She is officially 29 lb 1 oz (11th percentile) and 36 inches tall (4th percentile). Her height/weight (proportional) index is at the 59th percentile. WOOOO HOOO. She is actually a bit heavier than they would like to see her - for kiddos with CP/tone issues they recommend staying in the 30th to 50th percentile for height/weight ratio. Who would have every thought Aleah would be chunky?!?! The team said that Aleah is hitting milestones that they honestly did not ever dream she would reach - she even jumped for them and had both feet off the ground :) Her communication is improving, she continues to learn things - things we had never thought possible. With the start of Ketogenic Diet this month - we have to change nutritionists and transition to the keto team - Miss C has to let us go. Dr. R and Miss J say that there is really nothing more that they can/need to do for us at this point. Aleah is a rock star (their words although I couldnt agree more!) and it is time to switch our focus from eating to more important things like communication, learning/cognition and maybe even potty training down the road (eek! oh I dream of the day!) ... they said that at this point they wouldnt ever say there is something that she wont do. They said she would never sit up and she climbs the ladder to go down the slide - Miss Js words who are we to say what she can/cant or wont do!?! We have our home team of therapists and resources that we can draw from as needed. I have their email addresses and if down the road things change and Aleah is eating more and we want to look at a tube wean - we can always come back at that point. Who knows - Aleah has shocked us all before whos to say she wont do it again!? We will continue to follow-up with Dr. B in the developmental peds clinic. Mostly so that we can have a documented record of her cognitive progress in her medical chart. More tears, a walk down memory lane as we reviewed her chart and oohed and awed over the progress and the remember when she couldnt see? or remember when she couldnt sit up and we were just hoping for an independent sitter? It was a very bittersweet visit - exciting to be able to say we dont need this service anymore! but so hard to let go of the one place that I felt comfortable and safe in the Mercy system. Another chapter in the book of Aleah has closed. But what an awesome chapter we have just waiting to be written before us! Aleah is in the best place health-wise she has EVER been. She is a complex medical kiddo - things will never be perfect and there will always be stuff to address/deal with. She can get sick and go downhill in nothing flat - I dont mean to say that we can sit back and throw all the cards in the air and just let things fall where they may, that cant happen! But the baby that wasnt supposed to see a year old, the toddler who was deteriorating before our eyes and coded just a little over a year ago - she is now a preschooler and her height and weight are on the chart!!! We praise God and thank Him daily for the blessings that are bestowed upon Aleah and our family. God is so good. All the time. All time. God is so very good! We thank YOU also! Thank you for your prayers. Thank you for your support. Thank you for your encouragement. Thank you for giving of your time, energy and finances to send us to Cincinnati for treatment. Thank you for loving Aleah and our crew. We couldnt do it without you! Stay tuned. I am positive that Aleah will show us that miracles happen every day and Aleahs Victory will continue to unfold right before our eyes!
Posted on: Mon, 01 Sep 2014 05:28:33 +0000
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