The hard stuff of Hypotonia

   I sometimes become bogged down in the hard stuff of life. Don't we all? I spent the weekend feeling like an awful mother because of Sparrow’s needs. You see, I get these obscure explanations about her needs. The "why's" and "how much's" are never explained to me in a way that I can still agree with them after the person who is here to help, leaves. Don't all babies walk on their toes? Aren't all babies flat footed? Why does she need a Developmental Therapist? How far behind is she? What happens after she turns 3 and we are out of the program? How horrible of a mother am I when she needs a therapist to help her with every part of her life? Oh, the accusations. Are they pushing her to hard? Would I be selfish and cruel to her if I refuse the care that trained professionals tell me she needs? Can you hear my heart breaking?
   There are no answers to some of my questions. Even her diagnosis is vague. Even though I can see the results of it for myself. But this I have - I have a God who knows no puzzle or mystery. He knows no confusion or vagueness. He knows all of Adelaide. He knows her smile and her DNA. He loves her! He loves me. In Him I will place my trust. In His careful hands I will place my precious daughter. I ask Him to confound their efforts if they have alterior motives. I ask Him to heal her pain. I ask Him to bless her life, to make her His own. I ask Him for wisdom in raising her to be the woman He wants her to be. Ya know what? He answers me. He answers me because He loves us. Because of His love for us I know I can trust Him. His love which He proved over 2000 years ago.

Swallow study number 2

Today it was feeding therapy ***M, she ate a Pringles stick for lunch!!***. Tomorrow is her second swallow study. We are hoping to find out that she is cleared to swallow thin liquids without choking (and that it's just our imagination that she is choking on the thick stuff). I am glad for the pediasure that I was originally hesitant to give her. It's keeping her alive and keeping the weight on.
Wednesday we go for a recheck to the Neurologist to make sure her tone isn't worsening and to find out why we are having some glitches. She is no longer tracking objects with her eyes and her tongue is deviating to the left when she sticks it out - which is often.
Thursday we have PT and she is getting fitted for her leg braces. I am told that they have cute colors/patterns to pick from. I haven't been able to make this OK in my head yet. Of all the things that have been difficult you wouldn't think this one would be that bad. But I flat out don't want her to need them, and I hate knowing that she does.

early intervention

I have learned so much today. My brain will probably take a few days to catch up. A Dr. through the county and her (and my new) coordinator came to our house to evaluate Sparrow. I was one nervous Mama. Is my house clean enough? Will they deem me unfit and take her away? Will they scold me for not being more proactive or call me a hypochondriac???? Well, none of my fears were founded. It was a pleasure relaxed, down to earth, and thorough! In fact they were here from 9am till 12:30pm. Lots of interacting with her and seeing what she can and can't do physically, socially, emotionally, cognitively... A Dr. who took hours to watch her and and study her at home to get a really good picture. There is so much involved that it would take another 3 and a 1/2 hours to put it on here.
In the end it comes out like this... Sparrow is ABOVE average except physically. WOOOHOOO on the smart girl!
Physically, she has low tone and her muscles are weak. This shows up in the way she can't sit but she is so determined to be stimulated mentally that she pulls herself to stand. Low tone is a vague term to me. I learned that it's all about the ability of muscle to resist and stretch. The example that She gave me was this: if you have 3 rubber bands one may be very tight, one may be very loose and the other may be in the middle. the tight one is high tone or hyper tone, the loose one is low tone or hypo tone the middle one is average or normal tone. Her muscles don't have the range of expand and contract like others. This is different from weakness. Her Muscles are weak, she can't do anything for more than a few seconds then she gets wobbly in whatever muscle she is using and needs to stop and rest. Because of her bleeding when she was young and eating problems, nutrition is really something to get fixed first. Obviously she needs calories and nutrients to build strong muscles and be able to use them.
we have 5 goals for Sparrow to achieve in the next 6 months (likely, at least some of these will be met in way under that time).
1) feeding herself finger foods
2)sitting up
3)crawling
4)sleeping though the night
5) I can't remember what #5 was (she got up at 4am today, forgive me for being a little foggy?)
I will get a written report of all the things we did and went over today as well as a follow up on the suggestions. Such as a complete Physical Therapy evaluation and continuing her Feeding Therapy (this will transfer into my home though).
As a family we have a lot of work ahead of us! But what better job is there than raising a child for the Lord?
I'm changing the font because I'm changing the subject... we had two really special visitors come to our house today. One of them is being held prisoner against it's will... but only for a short time. :)
We had the pleasure of being visited on our back deck by a large box turtle and a toad. Sparrow has been fascinated by frogs from day one, so I am keeping her first real live frog captive until husband can see her with it. She doesn't know it's sunning itself right in her very own living room. She wont be able to touch it but wow to see your favorite critter up close and personal for the first time. FUN!

Swallow test

   Sparrow had her swallow test today. She had to eat thin puree then thick puree. She did not aspirate on those. She then had to drink unthickened formula she aspirated right away. For those who don't know, aspiration is when something besides air goes into your lungs, in this case food. Her reflux is causing her to aspirate. For now they told me to thicken all her liquids. I don't know what if anything they will do long term. She is already on the highest dose of medication she can be on for the reflux.
   Tomorrow a physician is coming from the county to evaluate her to see if she would benefit from an early intervention program. If she qualifies she would get speech therapy (for her swallowing), Physical therapy and whatever else would help her to catch up developmentally. I hope they tell me she doesn't qualify, I hope they say she is just too healthy and "normal". That feels selfish if she needs the help though.

tests and appointments

At her eval. her therapist said that she is behind on her eating skills, she eats like a far younger baby. She needs to have a swallow study done so that they can see how she swallows (because of the choking and other noises that she makes). She is going to start using a special spoon that will help her use her lips and she got an oral stimulator (by Nuk) that she loves. We need to give her jaw support as she drinks her bottle and possibly also when she uses a spoon. Her low tone could be playing into this as well as her reflux. There are worse things. Of course she didn't once choke, little kids are like that though. The fun part was tha twe got to get all messy and she got to sit in a "real" highchair. (she slid just as much as she does in the one that we have)