01.30.13

What we’ve learned:

Heart: Hannah’s heart is ok. She does have a small hole where blood flows from one side to the other, but it is not a concern. Many people are born with this, and while most of these cases close themselves, even if it doesn’t, she shouldn’t need a surgery to fix it.

Lungs: Hannah has a small spot of lung disease on one of her lungs. It is ‘mild’ but could pose potential risks if it gets worse. Thus, we head back to Mayo on the 7^th to have a Nissen band constructed around the top of Hannah’s stomach. The doctor will take the top part of her stomach, wrap it around the top of her stomach, and staple it to itself. This is the best option to stop reflux from coming up into Hannah’s esophagus and leaking into her lungs. It should be a quick and not to painful recovery for her and we are hoping to be back home over the weekend.

Kidneys: With Cri-du-chat Syndrome, kidney function is sometimes compromised. Hannah’s abdominal ultrasound looks good, and her kidneys were fine.

Vision: The pediatric ophthalmologist agrees that the structures of Hannah’s eyes are fine, but she may have a bit of delay in developing her ability to see well close up. She may need glasses, but they will retest her in a few months.

Physical Strength: Hannah will develop slowly. She is getting stronger every day and we pump her full of therapy to help maximize her growth. I was looking at a blog from a mom of a 5p minus child, and she had posted her daughters milestones. Child to child, there is much variance, but as a base, her daughter could sit alone at over a year, said her first words at over two years, and walked alone at over four years. She does note that now the problem is keeping up with her!

Cognitive Development: The greatest indicator to Hannah’s future is based on the size of the piece missing on her fifth chromosome set. Hers is large. It would also be based on the duplication on the tenth set, which is also large. The bigger, the worse it effects a child. Hannah will probably not be able to live alone and will deal with at least a moderate, more probably a severe, mental handicap.

Weight: Hannah’s growing is great. Thanks to the G-tube, she gets all she needs and is finally ready to move into a size two diaper! Thanks to her cousins, she is more than ready to move into her stylish wardrobe:)

What we know:

Hannah is beautiful. She is perfect in her own way. I am so thankful that Hannah was sent to us, she is a blessing that God has given our family.  Every first she has will mean more and be more special than we could have ever imagined. Eli loves Hannah, and her smiles when he gives her Eskimo kisses tell me that she already knows and loves him.

We will have our hardest days with Hannah. My greatest fear is the day that we will no longer be able to take care of Hannah the way she will need to be cared for. Right now though, she is all ours-every smile, every laugh, every lesson of patience, acceptance, faith and true love.