This last few weeks have been a nauseating roller coaster- one that I wish no parent ever has to ride. It all started with an odd reoccurring rash, Ava's left leg turning orange, slightly swelling, hives, followed by tiny eraser sized bruises all over her leg- a sign of her little capillaries filling and bursting. It's happened five times in four weeks, the first few times we chalked up to a bug bite or some odd irritation as it never lasted too long. Then a worse episode while we were on vacation, then a doctors appointment a few weeks ago. It was a mystery- referrals to the allergist, an ultrasound ordered, blood work completed.
A few Thursday's ago we went to the allergist, again her symptoms are a mystery. A scratch test to rule out a dairy and a cat allergy are completed. No allergies to the obvious. The allergist says he'll do more research and call me soon. That same afternoon we headed to the ultrasound, no vascular issues were found- yay! But, still her symptoms are confusing. In the middle of all of this we received part of her blood work results- white blood cells are "concerning"- follow up needed. We Google, we research, we worry. Google is not your friend when you are dealing with odd blood work in a five month old. After a phone appointment with our primary doctor the Friday of the same week in which we were again told her blood work wasn't right- red blood cells numbers are off, platelets are too small and there are too many of them, white blood count low- they need more blood for closer testing and a blood smear test. Also, she was referring all blood work to a hematologist for furthur review. We went back Friday for more blood work- three big tubes of blood were needed from my tiny five month old's body. Her body wouldn't cooperate though- a needle poke to her arm, her hand, a poke to her heel and her finger and only a few drops of blood to show for it. Her veins are too tiny. We had to wait another day and went into the weekend lab that Saturday morning with a very hydrated and well fed baby, holding our breath for a better outcome. We waited and waited and get called back, luck is on our side as the same guy that so easily got her vein on Tuesday was working again this day. He has to get one rare test approved over the phone, yet the lady whom approves it is on lunch- ugh, another set back, lunch at 9:30 on a Saturday morning? After a trip to Dutch Bros. and the Dollar Tree to spoil the oh so helpful and oh so patient big sister (a new baton, coloring book, and her own box of tissues!- I love 4 year's old SO much!) we head back to the lab where it took two pokes to get the blood we needed. Then we wait. Waiting is the hardest. Waiting makes you crazy. Our wonderful doctor emailed us with preliminary results Monday stating that Ava has a genetic disorder called Alpha Thalassemia Minor. This is a blood disorder that in the most basic terms means her body does not make red blood cells the same as everyone else so she will always be mildly anemic. It's not something that can be solved with more iron in her diet, it is just the way in which her blood is made. This is something that should not affect her life in any negative way, it's mainly something to be aware of since her red blood counts will always be a little off. So after hearing that news we were super relieved thinking that explained all the issues, however that was not the case. The next day our wonderful doctor received the rest of Ava's blood work and the Alpha Thalassemia only explains why her red blood count numbers are off, however between the two sets of blood work (5 days) her white blood count had fallen more and were well below normal and her platelets had risen and were quite a bit higher than the normal range. She had been consulting with the head hematologist at OHSU and with the pediatric oncologist/hematologist at Doernbecher Children's Hospital. They do not have an explanation for the odd blood work or for the odd reoccurring rash- they just know that her bone marrow is not making blood like it should, in addition to the issues associated with the Alpha Thalassemia. So they decided to test her blood work again in two weeks and then we'll go from there.
So that brings us to today...Ava will get more blood work on Wednesday of this week and we should, hopefully, get results back Thursday or Friday. We are hoping that because she's a baby and baby's can sometimes be tricky that maybe her blood is just underdeveloped and her body is regulating from the Alpha Thalassemia and that soon it will all be worked out. Otherwise no one has any real explanation of what's been going on. So once again, we wait and we hope.
Throughout all of this Ava has been happy, growing like crazy, rolling all over, blowing hundreds of raspberries each day.
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