Movin on

Sorry it's been a while. So many wonderful things have happened! God healed whatever the Dr's suspected was wrong with Sparrow’s Chromosomes! I know that many nay-sayers would argue that there was nothing wrong in the first place, but how many of them are trained to recognize these types of problems and do they regularly reject God in other ways too? The next wonderful thing, Adelaide crawled on her hands and knees! This is so amazing when she has so little physical endurance. It is truly inspiring to watch. When Husband and I were still reeling from that wonder she did it again... she sat up, by herself. The very next day! That was one of the milestones she was behind on. What a relief!
Tuesday I was anxious about expecting  a  confrontation with the feeding therapist... God worked that out as well. The pediatrician called her and talked to her. Now things are going really well.
A little about her feeding...
Sparrow is having trouble eating. Her tone makes her reflux worse. It also makes getting the food into her mouth then swallowing it very difficult. You and I take it for granted to be able to pull food or drink into our mouth, move it to the back of our mouth and swallow it. Sparrow has to really work hard to do all these things, then she chokes on it once it goes down. When it finally goes down the right tube, it comes right back up and she has to deal with it again. It takes an awfully long time to straighten all this out. She has to learn so much and it's hard work. She needs the calories to have the energy to do all this learning and concentrating. Our strategy now is to skip the bottle and sippy cup, going straight to a regular open cup with thickened liquids. She is using a one ounce "nosey" cup. and a "maroon" spoon. Yep  it's a little odd for an 8 month old to eat like this, but Sparrow just doesn't fit the mold. I am learning to be OK with that. It's really hard going through this as her mom. Yesterday I wasn't able to get much in her try as I might, and she was hungry. Crying, chewing on her hands calling "mama, mama" with that whiny desperate cry of defeat. It's sad and you feel very guilty for not being able to do something so basic as feeding your child. Your child who has no idea why you aren't making it better. In the mean time you wait for people who don't understand to critique you and give you well meaning advice that is hurtful.
I am glad that I know God is in control and that all I have to do is trust and obey. Speaking of obeying...
I am always watching things on TV and the Internet that are disturbing. They bother me long after the viewing of them is over. Last night Husband finally outright forbid me to do it again. If I see something that I know will bother me I am to close the page or turn the TV off. I love submitting to his authority. He is doing this to protect me. Many people in this day and age wont understand that, they will get their hackles up. IMHO that is because it's been abused in their lives or they have seen other loved ones abused. Rest assured, that is not our case. Ours is in obedience to God, (Colo.3:18,19)Wives, submit to your own husbands, as is fitting in the Lord.Husbands, love your wives and do not be bitter toward them. And, (Eph 5:22-25) Wives, submit to your own husbands, as to the Lord. For the husband is head of the wife, as also Christ is head of the church; and He is the Savior of the body. Therefore, just as the church is subject to Christ, so let the wives be to their own husbands in everything. Husbands, love your wives, just as Christ also loved the church and gave Himself for her,... You are free to ask if Mike obeys his part too, the answer is a resounding Yes! We are still learning how to fit into our roles, we often fail. We keep going though. I guess I changed the subject.
Back to feeding Sparrow…I am keeping a log of everything she eats and her reactions. That way we know exactly what her caloric intake is and hopefully we can refine thickness, taste, temp... to fit her needs to best help her. Keep praying for us this is a marathon not a sprint. TY

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.

Family

I like to research. I like to do genealogy. I am looking at my husbands family bouncing from one branch to another as I hit endless walls. I wish I had all the time in the world to transcribe census records and document headstones. How easy I could make it for some other person interested in those areas of the world and the people that lived there. Right now I am stuck on all sides and can go no farther. I will figure out a way or a new avenue to try on another day. I don't have hours to sit and do this anymore so time is a factor too. I wish someone would pay me to look up and document their family! What a fun job that would be! I know someone else would probably rather have a root canal but as my Step-Grandfather used to say "not everyone can like chocolate".

A New Day

It's only 8:30 and I feel like I've had a full day already. In a good way, that is! Sparrow slept through the night for the first time in days. Husband and I are very thankful for that. She woke up bright and early, ate a good breakfast and went back to sleep. I used that time to climb into my Saviour's arms via His Word, then read a few chapters in my Davis Bunn, Janette Oke book "the Hidden Flame" book #2 in the Acts of faith series. I haven't read the first one but I bet it's good! I don't know if it's reading this book or something else but the Lord has, for the last two days been really reminding me of that time when I first got saved. The contrast of how the world as I knew it was Gone and the beauty of a new one opening up. The physical world seemed to change, I can't explain it, a better writer than me could give that a try. I can't wait to see what the rest of the day holds! My plan is to clean a little through out the day, applique my family's handprints and listen to a focus on the family podcast  in between taking care of my little bijou girl.

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)

Long way to go

It will take me some time to get all the information back up and today was probably not the best choice to start this! LOL
Today Sparrow has her eval at the dysphagia place to find out why her choking and other swallowing problems are worsening. She is a strong little girl and her joy is infectious. As Husband says "she inspires me".