Now and then I forget some things

So much has been going on the last few weeks. Where to start... Well, both girls ended up coming down with strep throat but Gideon, Hubbs and I all made it thru unscathed. Still counting my blessings on that one. Gideon's last labs where great. Crit of 32 and retic of 1.7. So great he was officially released from the care of his hematologist. I'm over the moon. We're finally done with all the isoimmunization issues! He's even on the curve for weight and height for his actual age now! This month has been great for him.

I picked up a part time job a while back and have been working a ton. I wish I could continue to be a full time stay at home mom but it's just not in the cards for us right now since we have big plans. Really big plans. We're going to buy our first home this spring (if everything goes right). We feel like it's finally the right time. Hubbs got a promotion and a huge raise last week. Granted to most people making 29k a year is laughable, to us it's a 6k a year raise. That's enough that after we finish saving our down payment for the house I should be able to quit working and stay home full time again. xx Fingers crossed xx.

The one big problem I'm having with working is I've just about lost all my gusto in caring for our home and schooling the girls. I go to work as soon as hubbs gets home and usually get home after 10. Then I work 10-11 hours a day on Sat and Sun each. I put so much energy into doing a good job and working hard that I've basically got nothing left for my family. I'm overwhelmed. I've been so cranky from not getting enough sleep that I've even been yelling at the girls again. That's not a part of myself I want the girls to deal with. I want to have time to do everything I need and want and get enough rest and it's just not happening.

There's lots of other stuff I wanted to talk about but this post has jumped around enough as is. I'll wait for another spare moment and update again. Hopefully soon.

Updates and snippits from our holiday season

First off, an update on Gideon. He has not needed another blood transfusion and his retic is in hyperdrive at 7.9! And 2 weeks ago we got the news that not only is he increasing his hematocrit on his own now, they where finally able to type his blood! He's been filled with so much donor blood that he has always typed as O- but hubbs is +/+ so we knew he had to be positive blood type but we didn't know if he would be type O or B and he is O+ just like his biggest sister. I know that's probably not big news to most people but for us it's a minor miracle. In other Giddy news - he was diagnosed with sever plagiocephaly and has been fitted for a helmet, which he has been in for about 3 weeks now. He's doing great with it and his head shape is already changing. It's amazing the progress you can see on a daily basis.

Happy Thanksgiving

Happy Thanksgiving (a smidge early)! I hope everyone has all their preparations done and is able to have a wonderful day. We'll actually be busier than we used to be. We always spend holidays at hubbs parents since they have plenty of space (compared to our tiny 1000 sqft townhouse) and they only live 5 miles away so it's not too much of a pain to pack the kids up to travel there. We will be joined this year by hubbs sister and brother in law and their 2 boys and hubbs grandparents and uncle. Even with a big house it does feel a bit cramped with 9 adults, 5 kids, 3 dogs and a cat. But back to why we'll be busier - this year we've been asked to make all the veggies for our meal. Every year I make mashed potatoes (they are my father in laws favorite) but we're also gonna do mac and cheese, green beans and corn. I'll post the potato recipe soon (it's so very yummy). The in laws are doing the turkey and stuffing and everyone else is bringing bread and sweets. This is the first year they have delegated tasks out and I'm glad they did. Now they can enjoy more time with everyone (outside of the kitchen that is).

And now for a little update on Gideon. He had his fourth transfusion on Friday  He did well with it. The few tests they ran came back with nothing new. We did run an antibody titer on him and his Anti-D came back at 1:256. That explains why his transfusions aren't lasting very long. We're looking at doing some IVIG transfusions to try and dilute the concentration of antibodies in his blood so his transfusions last longer and we can give his bone marrow time to start working on it's own. His retic is up to 0.3 now. It's only a 10th of a point but I'll take any increase no matter how small.

On Monday we had to go back to the hematologist for a follow up CBC and while in the waiting room a sweet young girl asked to talk to Gideon and wanted to hold his hand. I was happy to say yes. While the kids were "talking" her mom and I shared with each other why we were there. Her sweet little girl was there for chemo. When we ended our brief conversation I had tears in my eyes. I feel very humbled. I had been feeling like Gideon's struggle was as bad as it gets. And while it is bad for the condition he has - it's nothing compared to what other children are faced with every day. I'm grateful to that little girl for sharing her joy with my little boy and thankful to her mom for showing me that even when faced with something devastating you can still have joy and peace and love in your heart.

I'm so very thankful for the love I have to share and the love that is shared with me every day.
I hope you all have something wonderful to be thankful for today.

Like I don't have enough to do...

So last night I got a call from our pediatrician that the lab didn't have enough of Gideon's blood to run his reticulocyte count so we have to go in today for another blood draw. We've already gone in twice this week for blood work and his RSV shot. Grrrr.

I guess I should explain that Gideon has hemolytic anemia. It's the main side affect from a condition I have called antibody isoimmunization. It pretty much is only a problem if I'm pregnant or need a blood transfusion. I had it with all 3 pregnancies but it tends to get worse with each one. It was bad with Giddy's. We started intrauterine blood transfusions at 22 weeks gestation to keep him alive and we did 5 over the coarse of 10 weeks. He was born at 32 weeks and 5 days from a complication of the transfusions. Since birth he has had 1 IVIG transfusion and 3 blood transfusion. He spent 5 weeks in the NICU and we have to check into the PICU when he needs another transfusion as it takes about 24 to 36 hours to get it all done.  We go weekly to the doctor to check his CBC, which is done on site, but his retic is outsourced to a big lab.
His current hematocrit is 28 and his retic from 2 weeks ago was 0.1. His crit should be over 35 and his retic should be over 0.5. We're currently looking into Epogen injections. It would be an off label use but I've found other moms who have used it with success. I'm sure I'll be in for quite a fight with insurance as it's very expensive but it's much cheaper than a bone marrow transplant which is where we're headed if his retic doesn't start increasing and his crit doesn't stop dropping.

If you happen to find this post by search engine and want to know more about my experiences with being sensitized or with dealing with prolonged hemolytic anemia please feel free to email me. There is also a great board on Baby Center dedicated to the topic and you can find a wealth of information there.