May started out with a bout of sickness which worked its way through our kiddos until it landed Lydia with a stay at "hotel PCMC". There were various combinations of throwing up, diarrhea and fevers running through the crew. Lyds ended up with a bad case of diarrhea and some occasional vomitting. As a result she became quite dehydrated and her blood sugar levels plummeted. She was admitted the Wed. before Mother's Day and made for a very happy Mother's Day by being released that day. She was diagnosed with Rotovirus, which almost everyone gets at some time, but her little immunosuppressed body wasn't ready to fight it on it's own yet. Gratefully we had Dr. Book and Corinne and all the medical workers who were on top of things to help her get her better quickly. Most especially, we are grateful that Heavenly Father has blessed her with so much good health and healing.
It was a relatively happy stay for Lyds as she quickly got feeling better with the I.V. fluids. She enjoyed crusin' the halls of the IMCU in the little red car, playing in the play room and watching Barney. I, on the other hand, didn't cope so well as I cried with her while she was getting her second I.V.. Her blood draw before she was admitted had been torturous because it was hard to get enough blood with her being so dehydrated. Then, to have two I.V.'s and numerous fingerpokes to check blood sugar levels did me in. Not that she hasn't had much worse, because she certainly has, but my anxiety skyrocketed again not knowing how long she would be there and how much more she would have to hurt. I get so tired of her hurting and hearing her plead through her tears for "no more owies". At least now she is able to well enough to cry hard and old enough to voice that she doesn't want any more. It was much harder to see her too sick to care and too young to tell us her feelings. O.k., my pity-party is done(at least until she hurts again).
She and the rest of the crew quickly recovered and returned to their happy, fun little selves. How blessed Brian and I are to have them! I am looking forward to a great summer with them!
Spenc and Lydia enjoying some brocolli (at least the taste of it for Lydia since she just sucks out the flavor and spits it out)
Shortly after birth, Lydia was diagnosed with a rare liver disease called Biliary Atresia. This is when the bile duct is blocked or too small, causing bile to back up into the liver which causes psorosis of the liver. When she was 6 weeks old, she underwent a surgery called the Kasai procedure in which they removed her bile duct and attached her small intestine to her liver in its place. This was in hopes that her bile would be able to flow properly and her liver would function properly. As weeks and months passed after her Kasai, it became evident that there was already too much damage to her liver and she would eventually need a liver transplant. She is now 15 months old. She continues to show signs of psorosis of the liver with a variety of symtoms. One of her main struggles for several months was not being able to grow because of malabsorbtion of fats and proteins. She has been on IV nutrition for a couple of months and it has been helping a lot. She was stuck around 13lbs. for several months but is now up to 16 lbs. If she puts on a couple of more pounds, she will be big enough for the portion of my liver that they could transplant to her. She is a very sweet, precious baby. I call her my "sweet angel baby" and she is!