We have had Speech Therapy - Occupational Therapy and Feeding Therapy.. assessments galore.. doctors appointments.. phone calls.. etc. It's all for a good cause and making positive headway!
Our appointment with Dr. Young was intended for us to touch base on Annabelle's progress and also address some questions I had with her skin. Once Dr. Young looked her over she smiled and said, "Ashley, you're not going to believe this! This just may be the FIRST 'common' thing Annabelle has ever given us!" I smiled and asked, "Ok, what the heck is it?" It's called Tinea Versicolor. It also explains the thick patches that have covered the back of her neck and top of her back. The spots are all over her legs, arms, shoulder and chest. Fortunately, they don't bother her and I didn't have any concerns.. we were just curious. So WAHOO! for Annabelle - I am almost inclined to write this down in her Baby Book as a "1st" for something ;)
Next, Dr. Young wanted to discuss the tube feeding progress.. I began talking while she scrolled thru her laptop. She smiled and looked down.. I didn't know what to think of her reaction. I didn't know if it was a subtle satisfaction with Annabelle's 'growth' at least, what I hoped would be 'growth'.. then she looked up with glistening eyes and said, "Ashley, Annabelle has gained... FOUR POUNDS in the last month.... wait, she's GROWN AN INCH AND A HALF!" Mind you, Annabelle stopped growing in her height almost 9mon ago and hasn't made any progress since.. she hasn't gained any weight since April when we removed all food from her diet. And since we have placed the NG Tube, she has grown tremendously! I cannot believe it. I fought back tears with every ounce of strength I had because I knew the moment the first tear would fall, we would both be sobbing like babies. I told her, "Dr. Young, I don't want to admit it - but I know it's working. I hate this tube so much, I hate everything about it - but it is saving my little girl and for that I am grateful and I have no doubts this is what she needs. I feel like I JUST met my daughter! Her personality is priceless, the affection she gives, the way she lights a room with her tiny spirit, the simple things that absolutely fill her day with happiness - this little girl is absolutely incredible, and I am learning and getting to know more and more about her everyday!" It was quite a happy time in the doctors office during this visit. Dr. Young and I both shared many motivational thoughts about this journey we are on together with Annabelle, what she's teaching us and how promising her future looks. We are blessed to have her part of our 'family' (Dr. Young), I wouldn't be able to fight this battle without her, that's for sure.
Annabelle had a really hard day Tuesday. She was EXTREMELY emotional, any and everything I tried to offer to help soothe her turned into a crying breakdown. The most hateful thing I did was buckle her into her carseat and that led her into a shivering cry with POURING tears for nearly 20min. She wanted to be held. She wanted me to carry and walk her all over the house.. around outside.. anywhere as long as I wasn't comfortable, doing what I needed or happy. She just wanted to be close. Im confident she was in pain, when she acts this way, she wants to be held close and she will not sleep. That was the hardest part of the day, I knew she was exhausted as she normally sleeps most the entire day but Tuesday she couldn't sleep, instead she just cried with her little head on my shoulder as I walked.. and walked.. and walked.. and walked..!! She slept well that evening though and I was able to catch a few welcomed smiles.
Her tube also came out and this time I didn't put it back in, I let it stay off for the rest of the day and prayed and begged that she would take her feedings every three hours orally and wouldn't make me put the tube back in until bedtime. Each time I have replaced the tube, I have struggled to get it in her left nostril - it will not glide in, the right side however will easily move directly into place. I don't mind it being on the right side, but I don't like having to tape that side of her face constantly and not being able to give it a break! Her poor skin is just raw I know and I wish I could give it some relief and I can't. She is getting much better about her Tubie though. She is allowing me to put a new piece of tape over her tube to keep it positioned without fighting me. (HUGE MILESTONE!) And when I am replacing her tube, she still fights but not nearly as bad and the recovery time is becoming a much faster process - as soon as it's over, I let her run away to play and she seems much better. She is also allowing me to hook each of her feeds up without fearing I am going to hurt her and if you ask "Belle, where is your tubie?" She squishes her little nose and points to her face :) Mady loves to protect her sister from everyone, including protecting her sisters feelings. On the playground the other day, Mady approached a little girl that was staring and said, "That's my sister and that's her tubie. It helps the formula get into her belly so she can grow to be strong. You don't have to stare at her, ok?" The little girl piped up and said, "Ok! Want to go swing?" Mady said, "Yes! I'll race you!" and they were off. It was quite a proud moment.. for me.. for Mady and deep down, I felt proud for Annabelle too although she had no idea the conversation that took place. This tube life is becoming part of our life. As much as I can't avoid it. I can't look at Annabelle and NOT see the tube yet. People don't pass us in stores or public without looking at Annabelle and then giving me a sympathetic warming smile of encouragement as they pass - people don't see my baby girl as Annabelle and me as her mother. They see Annabelle as a fighter and a sick toddler and see me as the exhausted mommy pushing the stroller and offer eyes of strength & warm hugs in passing. Adults are more curious than children it seems. They pitty Annabelle and our family - kids just want to know what the heck it is and then they move on. These experiences we are living may never go away as long as Annabelle has a tube taped across her face. I hope my skin grows thicker and I can stop taking those judgement I see in a strangers eye, directly to my heart. It will be ok one day - for right now, it's still quite an artificial adjustment that I am struggling to look past.
Speech Therapy is going well. Annabelle is finally putting two words together for the first time. She only has about 2-3 phrases (maybe?) but she is getting there. Her main 2-word phrase is 'have-some'.. that's her way of asking for anything we have that she wants (lately it's been food :( but at least there are words and no longer fits of frustration!). The speech therapist and I reviewed our short and long term goals for her, made a couple changes and agreed to touch base after Hopkins. Our 'Early Childhood Intervention' facilitator came to our house today to spend some time with Annabelle, she wanted to see us before our trip to Johns Hopkins next week and wish us well. They are a wonderful group of women, Annabelle has made lots of improvements since working with them and they are always very patient with us when Annabelle retracts back several steps (something she always does when she is undergoing a lot of tests.. she always takes a few steps backwards and I don't blame her).
I called to have an assessment performed for Annabelle to determine if she needs or qualifies for any additional therapy for feeding. The speech therapist asked that I take this step with Annabelle because she wasn't seeing as much improvement as she would like and knew Belle is capable of much more but needs the resources of an occupational therapist to support it. Meanwhile, since we've started to introduce foods back in, Annabelle is truly struggling to eat - ANYthing practically. There are a very few foods she can eat and actually swallow, and that varies by day. Today she could not eat apples, green beans, potatoes or chips without spitting them all right back out. She will take a bite, possibly chew a few bites, scrape everything off her toungue and then repeat the process. She will not swallow the foods and rarely even attempts to chew them. I have no clue what to do anymore to teach her this process! The same muscle you use to speak, is the same muscle you use to eat/chew - therefore if our expectations are for her to continue to improve in speech, they are also parallel to continue to show improvement in her eating habits. Both areas are failing so we all felt it best to reach out for support in every area to bring everything up to speed where it should be. The OT attempted to cut the apple into small pieces to feed Annabelle rather than her taking a bite on her own - just as I warned, Annabelle choked pretty badly, proving my point that she isn't chewing or swallowing properly when she actually does. We need some guidance at least so I can learn how to help her!I also called Pediatric Connections today to demand an explanation for the time it's taking to find us a nurse for in-home care. I am using abusing every resource that I can find as childcare for Annabelle until they hire someone for us. Fortunately, I must have had a 6th sense because they found a great candidate. She is a nurse that has a previous history doing pediatric home health care. I am looking forward to meeting her. I will schedule a Meet & Greet in our home this week and if everything works out, hopefully we can start building a routine with our new nurse in the next couple weeks!
Please continue to keep our family in your prayers. I cannot thank you enough for the continued love, support, encouragement, guidance, advice and selfless offering to help our family in any way you can. All we could ask from someone are prayers. That's all we want. We have our family. We have lights on in our house. Madelynne said grace at the dinner table tonight and Annabelle was proud to finish the grace mid-sentence 'AMEN!'. My girls were tucked in tight after jammies, clean teeth and a story. We are all home and together. We are blessed. We are blessed. We are thankful and we have more hope for the future than you can imagine. I can feel it.. FINALLY! I can feel the intense excitement and passion of nearing a diagnosis for our sweet Annabelle Grace! I know it's on the horizon. I know we are getting closer! I know we could not have made it this far without each and every one of you. Thank you.
Sweet dreams tonight. Count your blessings. Your family, loved ones, your healthy babies in their bed sleeping, thank God tonight for all you have. You're blessed. We are blessed for our girls, AK and I are blessed for one another and our family is blessed to have you. Thank you.
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