Endocrinologist appointment

After having Olivia'a blood tests performed nearly a month ago, we finally got in to see the endocrinologist today. The pediatrician's office had told us her numbers were normal. Well, they were just barely normal!  Her symptoms were in fact because she needed a boost in her thyroid medication for hypothyroidism.  She has been so very tired lately. Less and less endurance everyday. Constipation. Tummy aches resulting in disturbed sleep and fussiness.  And I imagine that being tired all the time made her fussy too.  We were so relieved that all of her symptoms can be explained by hypothyroidism that needs a medication adjustment.  Hypothyroidism hit Olivia at 4 months of age and will hit 80% of persons with Ds by adulthood.  Untreated hypothyroidism is a major contributor to mental retardation.  We have not noted less intelligence in Olivia than we would expect. But she has become increasingly unmotivated to do "harder work"  that I know she is capable of when she has the energy to concentrate.  I think that this uncontrolled hypothyroidism is why she has been crying at the drop of a hat. She is just always tired.  And sometimes when we adults are tired/ exhausted we just want to cry, too!  Hopefully we get our Olivia feeling better soon. Bad news is that she needs blood work in 4 weeks, then 3 months, then 3 months later.  No fun!

Stinkin' Tired

Yes, we have reached the point of being fall asleep standing up, can't think straight, stinkin' tired. We realize we have hit that really tough phase where you simply are trying to find a way make it through. O is loveable and a real sweetheart, but we are beginning to admit to ourselves that she is a demanding, extremely-fussy/colicky baby. She is this way all day from about 6AM until about 9PM. It is very hard to put her down during that time and if she does go down she only sleeps for a short while. She can be soothed and will sleep better if held - but that is a bad habit we are trying not to fall into. Having a child with a disability gives us an appreciation for not applying labels to people, but we hope the admittance that O is colicky will be cathartic and maybe bring some kindly souls out of the woodwork. At night, O is pretty good to Mommy - it is those days that are problem! Bless her heart, O seems to realize it is night and only feeds twice. However, due to her Down syndrome those feedings can take around an hour. 9PM to 6AM with two feedings just isn't enough sleep for O or Mommy. Daddy does the best he can to keep the house going while Mommy tends to O, but we do need a paycheck.

I apologize up front for any missed or late cards, slowly or unreturned emails, a lack of phone calls, a lack of future blog posts, a lack of future photos on Shutterfly, or trips out to visit anyone. We simply have to hunker down, focus on the home front, pull up our boot straps and get ourselves through this. As we don't see any reinforcements or calvary on the horizon, we know we're goin' to have to fend for ourselves - and that means being a bit self-centered for a while. We won't stay this way (we promise), but please have patience with us during this time. Please also pray for all three of us.

- Daddy O

Two Week Storm

As O puts it best ... it can be really tough to be a baby. It appears we have hit that stage that all babies must pass through when their hormones simultaneously tell them to sleep and to be awake ... causing them to do neither very well and leaving them in a state of fussiness. This is normal and not Down syndrome related.

Mommy has been an amazing trooper ... doing her best to keep O content and helping O remain as well rested as possible. This is definitely a major endeavor on Mommy's part. Amazingly, Mommy remains so calm and comforting through it all. Clearly, Mommy O was born to parent. Daddy says, let me push the vacuum and wash bottles - at least for those tasks I can understand what to do. We are getting through it and reminding ourselves that this too shall pass.

We still hope/plan to come to the family reunion on Sunday. O will call the shots on when, how long and in what form. The pediatrician was okay with us going but instructed us not to play "pass the baby" and to have people refrain from stroking her cheek or touching her hands. I will tell you, that is hard with a baby as cute as O!!! As we tell the young nieces and nephews, look with your eyes rather than your hands. Certainly by next year we will be ready to have anyone willing to take her off our hands to take her!!! Hope to see many of you on Sunday.

- Daddy O