Aaron's Hyper IgM Journey

Tuesday, June 26, 2012

Summer is here

Summer just wouldn't be the same without a visit from Serena!  We are thrilled to see her again.  She is taller than ever, but still full of all the same energy.  Aaron has enjoyed playing with his sister.  He seems to think she came just to play trains all day with him.  

Serena made a sticker chart to put next to her brothers.  She is quickly filling up the butterfly with stickers since she is very helpful around here.  She also gets a sticker each time she finishes her workbook pages.

 We have done lots of activities since Serena has been here.  This picture is of the car ferry we took from Kentucky to Ohio.  She is enjoying the Ronald McDonald House.  She has seen a magic show, won many prizes playing Bingo, saw a french horn and harp player play Disney music, and she went to the Zoo with her Daddy.  She even enjoyed the few days we were in the hospital.  She got to paint and then play with her own baby doll.  We danced to music and made all the nurses laugh.

Tuesday, June 19, 2012

Day+138 Inpatient

We made an unscheduled visit to the clinic yesterday because Aaron has been vomiting lately. His appetite is decreased and he does not eat or drink enough. They did blood work and found his kidney numbers were higher than they have ever been. Based on all of this the BMT doctor decided to admit him and begin the highly specialized practice of "watch and wait."

 Aaron's GVH is coming back on his skin and the doctors are concerned that the vomiting and loose stools may be a sign of GI GVH. They want to rule out all other possibilities first and then they may do a biopsy to decide. The biopsy would be a surgical procedure under anesthesia. We really hope it is not GI GVH (graft vs host disease) because that does not usually lead to good outcomes.

All of Aaron's meds were switched to IV and he was given fluids overnight. His kidney numbers are better today but still not great. They think part of his problem is dehydration, but more concerned about GVH.

 We are trying to make the most out of our hospital stay.  The kids did some nice paintings.  Child life came by with some toys.  Serena got a baby doll to play with and Aaron got a dump truck full of fun things.

Speech therapy will come by today to try and get Aaron to eat more.  Hopefully he will get PT and OT as well to get him moving around the room.

Sunday, June 10, 2012

Thank goodness for avocado

Someone once told me that humans could survive on avocado alone. I hope that is true. Aaron is following in his uncle Kerlan's footsteps and only eats one meal a day. The only thing he will eat is cheese quesadilla with avocado. Amazingly, he still has not lost any weight.

Aaron's steroids have been lowered significantly which results in a lowered appetite. I really hope he will eat more soon. I am afraid of what will happen when he gets tired of quesadilla and avocado.

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Friday, June 8, 2012

Please, Please, Please Can We Go Home

We are ever so thankful for how blessed we are. We have a great place to stay here at the Ronald McDonald House. Aaron is doing super well. His kidney and liver numbers are almost normal. He hasn't had any signs of graft vs host disease in weeks. His energy level increases daily.

But... We want to go home! Mike emailed the doctor and asked if there was any way we can go home sooner than September. We haven't heard back yet. There is not enough room for Aaron to run around in our room and he is not allowed to go out of the room to play like the other kids here.

We are saddened this week. The little boy in the ICU passed away last night and Jill, the teenager, is not doing well. She needs a miracle right now. Thank you all for praying for them and their families.

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Monday, June 4, 2012

A Really Really Nice Weekend

My Dad came to visit for the weekend. This is the first time we have had a visitor since we have been here. I so enjoyed the company and loved spending time with my father. Aaron was happy to play trains with his Grandpa Gary.

We spent the day exploring some shady places we can go walking in Ohio and Kentucky. We decided Kentucky is a lot nicer than Ohio.

Aaron is doing great. The better he gets, the harder it is to stay. He needs more space to play and run around. Aaron's potassium keeps falling and we continue to increase his supplements.

As we decrease his steroid dose, Aaron's appetite goes down drastically. We are lucky if he eats one meal a day. He is not drinking enough either. I have a feeling the doctor will increase his overnight fluids.

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