Donation Cards

We have been asking for donations to specific children on Reeces Rainbow for my 2.5 year old for about a year and half for Christmas and Birthdays. For each donation, I ask the person donating to fill out a card so that we can place the card in a photo album we have for him so that when he is older he will have an album full of kids that he helped bring to forever families.

Little did we know that a bit over a year after we started working with Reeces Rainbow that we would have our own child with Down Syndrome. (God was obviously at work here). In celebration of her birth, we have asked people to make donations to Reeces Rainbow and/or pick out a specific child to pray for in her honor. I am working on making donation cards to be printed for Adaline's album. Would those of you who donated please let me know that you did, the name you would like put on your card (for those of you I do not personally know), the name of the child you donated to and if you would like a bible verse put on the card (please include a verse).

Here are the donations I already know about, but need more information on:
Kellans Mom for Justin
Traci for Kiki and Debbie
Aunt Debbie -General Donation?

Thanks!!

Early On / Questions for other parents

9 Weeks 2 Days

Today we had our first visit from Early On. Adaline did her best to sleep through it. She is not a morning person (a girl after my own heart).

They said she has pretty good muscle tone and gross motor skills.
The were concerned with the following:
She will not retain a object put in her hand
She does not follow objects visually
The are concerned with the social emotional in that she does not visually follow people and they do not feel that she expresses displeasure well enough.
They are also concerned that she will not suck her thumb.

The good news is that she will qualify for in home therapy every 1-2 weeks. I am excited to get started and get her on her way to becoming all that she can be.

We set up a "goal" for her to be at her age level for skills by age 1.

So, here are my questions for other parents with children with down syndrome. I would LOVE feedback in the comment and please forward this post to anyone else who would be willing to respond.

1. What were your experiences with Early On?
2. How often did your children have therapy at this age?
1. Did you think it was enough?
3. Noahsdad.com has Noah in therapy 4 times a week. Do you think that is necessary?
4. How do you keep all of the paper work organized??? Binder, file etc? Does anyone know of  a good computer program where I could scan her information and keep it electronically?

Fact vs Fiction About How My Child with Down Syndrome Looks

When she was born, I was surprised at how perfect, normal and human mydaughter looked. I am not really sure what I was expecting. I have seen other children with down syndrome and none of them have 3 eyes or anything like that, but it still seemed odd to me how perfect she was. One thing that has stuck with me was when the doctor originally thought something was wrong, she told me that having an extra chromosome was like having bad blue prints. When you build the house it is not stable. I guess I envisioned a human version of an Escher drawing or the leaning tower of Pisa or something. I also would look at pictures of other kids with down syndrome. Many of them have some pretty weird features I wondered if my baby would have them as well. However, when I saw pictures of these babies with weird features with their parents, I think that their other 46 chromosomes have more to do with those features than their bonus chromosome. Trying to imagine someone else's baby who was born with down syndrome as mine is just as weird as imagining someone else's baby who was not born with down syndrome as mine because God did not intend those children for me.

It is possible my daughter is also guilty of having weird features that go unnoticed to me that the other 46 chromosomes are responsible for, but they are what make her mine. I am still in awe about how perfect she really is. She is in no way a human Escher drawing or like a house built with bad blue prints or the futurama sewer mutant that my fear lead me to believe she might be. 

She has 10 perfect fingers.....

.....10 perfect toes....

...and perfect little nose..

.... a beautiful mouth...

... and gorgeous eyes that are a deeper blue every day. - Credit SJL Photography

She is a perfect little sister for my son... - Credit SJL Photography

...her Daddy's little princess...

...and her mothers beautiful daughter.  - Credit SJL Photography

She is exactly who the world needs her to be! - Credit SJL Photography 

Thyroid NORMAL!!

Another strike against a certain doctors office..... After calling 2 weeks ago to tell me that Adaline's Thyroid was high, that we had to repeat the test in 2 weeks, that the results probably would not change and that we would need to see yet another specialist to get it treated AND 2 weeks of worry for me..... we got a letter in the mail to let us know that her second test came back normal...... REALLY you couldn't call and tell me that?

Jenks Adoption

There are some really cute bows and Down Syndrome awareness bracelets for auction right now for a family who is adopting two children. Please check it out!

Jenks Adoption Auction

Update

8 Weeks, 3 Days

Ok, I know I have been a total slacker on updating this blog. I see in my traffic feed that many of you have been checking in regularly and I am very grateful for that!

I am going to try and do a quick post about the major events in the last weeks.

Adaline was in the hospital for one and a half weeks with RSV. They finally sent her home on oxygen and she was able to get off of that a week later. She is now in heart failure. The RSV probably put her over the edge, but it was not something we were not expecting anyways. She is on medication for it and doing well on it.

The cardiologist suggested we see a gastroenterologist since she was not pooping every day. I was not super concerned because she is mostly breastfeed and from what I can tell, breastfeed babies do not need to poop every day. While we were waiting to get in with the GI doctor, the pediatrician suggested that we mix corn syrup in her bottles. It worked like charm and she was very regular. When we saw the GI PA, she told us to stop the corn syrup and start Miralax. They also wanted to run a bunch of tests, but I declined them because she was going well. They saw she had lost an ounce since her appointment last week, so they made us see a nutritionist who told us to start mixing formula in her bottles to give her more calories. The frustrating thing however is that the last time they weighted her she had a very wet diaper and was fully clothed and this time she had on only a clean diaper..... When we got our visit summary, it showed her diagnoses as "failure to thrive" and "constipation". It made me very angry because the did not weigh her accurately and SHE IS NOT constipated. When she goes it is nice and soft, she just doesn't go often. Against my gut, we started giving her the Miralax and she had a diarrhea explosion. So, then I stopped the Miralax and she didnt go for a few days and when she did go, she screamed in pain. I ended up taking her in the tub to try and help the pain while she pooped. We started the Miralax again and she still doesn't go every day and when she does go, it is very loose. I am not sure what to do now.

The GI PA also wanted her thyroid checked.  They called a few days later and said it was high. They said we needed to repeat the test in 2 weeks and then we would need to see an endocrinologist. I was so frustrated because it seems like everything that could go wrong with her was going wrong.

The next week we saw the cardiologist again (whom I really like). I told her we had a scale at our house and I am keeping track of her weight at home and she is gaining well. I told her about the thyroid and she said it was common for kids with down syndrome to have low TSH levels. I told her that it was her T4 that was high and she said that that could not be right. She check the results and saw that her T4 was indeed high, but not by much at all and she did not think we should be concerned, so that was a relief. We got her blood drawn again yesterday, so we will see how that ends up. No calls on that so far.

Overall, Adaline is still gaining weight well. She is getting more active. She is also getting a bit more vocal about being hungry and especially when she wants attention.  We still love her to bits.

I have a bunch of blog posts that I have started in my head and I will try and get them down and post them soon.

Store

6 Weeks 1 Day

Now that I have my girl, I have been having a lot of fun making things. I decided to make another blog to display the things I make incase someone is interested in purchasing them. You can also get a sneek peek at the photoshoot we did with Adaline on Saturday!