Friday, June 6, 2014

I bid you adieu...

So it's been about 2 months since I've posted anything. Things are going pretty well. The twins are 7 months and doing great!  Macy's counts have been relatively stable. She has ortho and nephrology coming up soon and hopefully all is still well. She will be 4 this fall, and if I had to guess I would say her transplant will probably be in the next 2-3 years.  She is starting dance class in a couple weeks, and will start school in the fall. I'm super nervous about that just because I know she's gonna get sick. But we need to let her live life too. I don't want her to miss out on all the things we are trying to save her life for. So I'm going to just suck it up and let her do it all. 

Let Macy be Macy. 

She loves dancing. And she loves being around other kids. 
She needs these experiences now. To live now. FA has no cure. Life expectancy is around 27-29 years old (and that's with a successful transplant). I try not to think about that part. I try to assume they will find a cure in her lifetime, so I don't have to think about that. 

Anyways, the original point when I started this blog was to keep family and friends up to date on what was going on with Macy so I didn't have to talk about it all the tine with everyone over and over. All of our family and most close friends are on FB now. When it seems like transplant is near I'll probably start a page for her on there; or just use my existing one. 

I found a company that turns your blog into a book, so I'll do that first. Then after I receive it I will probably delete this blog.  I want to thank everyone for all the support and kind words since Macy's diagnosis. I can't believe it's been 3 years since that horrible day.  It sure has been a whirlwind, but it's the hand we were given and there is nothing we can do about that. What we can do is choose to be happy anyways, and try to live as much life as we can while we are still here. 

"Nothing worth having was ever achieved without effort" Theodore Roosevelt

Here's a couple current pics of the kids. 
     Emmet (left) Reece (right)
    Our family of 5 at the zoo!!!

Lastly I want to close with my favoritest (<~~~~is that even a word) poem of all time. It's 'George Gray' by Edgar Lee Masters. 

I have studied many times
The marble which was chiseled for me--
A boat with a furled sail at rest in a harbor. 

In truth it pictures not my destination
But my life. 

For love was offered me and I shrank from its disillusionment;
Sorrow knocked at my door, but I was afraid;
Ambition called to me, but I dreaded the chances. 

Yet all the while I hungered for meaning in my life. 
And now I know that we must lift the sail
And catch the winds of destiny
Wherever they drive the boat. 

To put meaning in one's life may end in madness,
But life without meaning is the torture
Of restlessness and vague desire--

It is a boat longing for the sea and yet afraid.

Edgar Lee Masters 

Signing off for the last time!!
Take care,

Tuesday, April 1, 2014

Hematology/Oncology 2014

Macy had her Hemonc appt last Friday. The last couple appointments Adam brought her because I wasn't able to (on bedrest with twins, etc). After this visit I think she does better when he brings her for some reason. She was fine until we got in the room. Once it was time to draw her blood she had a hard time. Usually in the past she would get anxious and upset (which is normal and expected for a child whose been poked and prodded so much since birth). But this time she actually physically fought back so she had to be held down. She was screaming "mommy no" over and over as she was crying hysterically. I almost got up and ran out of there with her. Breaks my heart.  Afterward she picked out her poke orange car. I was really surprised she didn't go for the Doc McStuffins puzzle, but she really wanted the car. 

Her blood counts came back better than they've been in about a year. So that's good news!  This is the first time she hasn't gotten sick in between blood draws so that might be why. 
Her hemoglobin looks good compared to what her bone marrow biopsy showed last Sept. She had low iron stores in her marrow. It was recommended we give her an iron supplement. We were weary because too much iron is bad for those with FA. Their bodies don't absorb it properly. After consulting with the experts in Minnesota we decided to try it. Now that her iron stores are back up we can stop the supplement. 

Her platelets at 116,000 is actually up a bit from what it has been in the last 6 months. Normal is over 140,000. Hers will keep going down until she has her bone marrow transplant. 

Her white blood count 8.9 is also better than the last 6 months which has been trending between 5-6. 

Her ANC has always run lower. Even when all her other numbers were in the normal range when she was a baby. Normal is over 1500. In January hers were 400 which is really low. 1070 is more her norm so it's good to see it back over 1000. 

Her next draw is in June. Hopefully we can go another 3 months without getting sick. That would be awesome!  Macy is Turning 4 this fall. I'm really struggling with the decision on whether to send her to preschool. I really want her to be able to have friends and go to school. I know she would love it! But being around all those kids scares me too. The more she gets sick the quicker her bone marrow will fail. It's a tough balance sometimes between letting your child live a 'normal' life and keeping them safe.  I will atleast have her take dance lessons this fall. We can pay extra for a more private class where there are only 2 or 3 other kids in the class. She loves dancing!!!  

The boys are doing great!!  Their reflux is under control now with Prevacid and they are on hypoallergenic formula (Nutramigen) which has helped a lot. It's just really expensive. So many have been so wonderful in sending us their Enfamil coupons. We really appreciate it so much.  It is helping a lot!  THANK YOU!!!

We took our first family walk (all 5 of us---plus the dog) for the first time last weekend. It was finally warm enough (high 40's) to bring the boys outside. So we used our choo choo train wagon and went for a walk. It was nice. Can't wait for warm weather to stay. We've been inside since the boys came home from NICU in November and we are getting a little stir crazy. 

Take care

Wednesday, January 22, 2014

Life in 2014!!

Happy New Year!!!  Yeah it's a little late, but better late than never. Things are going pretty well so far this year; A few bumps but well!  For those who missed it, Emmet and Reece had their sweat tests for cystic fibrosis on 12/30. They were both negative so that means they are only carriers!  What a relief that was. A carrier has no symptoms of the disease because their normal gene takes over and does what it needs to. So no worries! :). Their results were very normal. A positive is 60+, inconclusive is 30-60, and negative is anything below 30. They test 2 spots, and Reece's were 14 and 14. Emmet's were 17 and 19. 

The same day Macy had her Hemonc (hematology/Oncology) bloodwork done. Her ANC came back startlingly low in the 900's. Normal is above 1500. ANC is the absolute neutrophil count which is a specific type of white blood cell that fights infection. Her Dr called for a retest 2 weeks later. We had that done on 1/13 and the results were critically low in the 400's. <~~~~that is horribly low.  Hemonc told us if she were to get a fever we'd need to bring her to ER right away to get her on IV antibiotics. Having such an inability to fight infection could allow a blood infection. They ordered a repeat blood test for 1/20, and if her ANC wasn't higher they would do another bone marrow biopsy (noooo!) to make sure nothing crazy or alarming was going on with her cells (like leukemia or AML-pre-leukemia). She had her bloodwork this past Monday and her ANC went back up to 1,218 (yeah!!!!) which is wonderful news.  It's not in the normal/normal range, but normal for Macy so that's good!  

I was so worried we were on the start of something alarming with her counts. It will happen eventually, I just wanted to put it off for a while. Now that the twins are here, and they are healthy; more than anything Adam and I want atleast one year (2014) to be a normal family, and to live a relatively normal life. We have many weekend trips, along with long trips (Maine, Boston, etc. and Disney World) planned. And a lot of camping and boating too!  Just one year of that too much to ask for!?!?!  

Other than that little bump Macy has been doing great. We've been hermits bc of the boys and them being premature so she's getting a tad bored, but once spring comes we are gonna go, go, go!!!  Can't wait!  I missed out on so much last year. With having horrible morning sickness, then bedrest, then preterm labor, hospitalized bedrest, and complications with my csection incision warranting 3 surgeries in one month (that was fun); I was basically out of commission from June to November. So I am rearin to go! 

The boys are growing fast. Emmet 10lbs and Reece 9lbs. They will be 12 weeks actual tomorrow (4 weeks corrected). I can't believe Reece has tripled his weight since birth. He was soooo small. Emmet is close to tripling his weight too. They both have really bad reflux right now and it has affected their eating. We have them on meds and they are starting to do better now. They projectile vomit so that's not fun. Macy had horrible reflux and is why she has a Gtube now. We were able to recognize the symptoms early with the boys, and got them on meds right away. Now they're only puking up 1-2 bottles each per day which is a great improvement. 

I realized I haven't posted any pics of the boys on here yet, so here are a few. 

Emmet left and Reece right

Emmet, Reece, Macy
Reece and Emmet

Emmet and Reece

Take care