Daily Archives: September 23, 2009

All I Want For Christmas

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Check out this set!

Check out this set!

Aside from a succesful bone marrow transplant, Cutler’s Christmas wish has already come true…his two front teeth are in!  If you look close enough, his two bottom teeth are right there and based on the amount of slobber he has many more quickly on the way.  Ironically we noticed the first one poking through on the dreaded Sept 11th when this whole madness started…also the same time that my watch stopped.  I am thinking I will just get a new watch, been wanting a new one for a while anyway.  🙂

The spinal tap went well.  This time around it actually occurred at 9 am and wasn’t delayed so we didn’t have to deal with his hunger pains.  He went right to sleep and continued to sleep for a little while after, which was long overdue.  I think this one finally caused some soreness in the back as he was consistently rolling to his side.  The doctor did come back and said that the initial look under the microscope was clean, but that we are still waiting for the test from the lab.  Apparently the initial look is done with just a sample of the fluid whereas the lab runs it through the centrifuge to push all of the cells together, so that is the real test, but he expects it to be clean.

Today was also Cutler’s last day of chemo for the initial round.  This is the time that he is most susceptible to infection, so we are doing our best to limit the visitors and are no longer giving him the number of kisses he deserves.  We had hoped that he might be able to come home for a few days before starting the next round of chemo, but the doctor believes that it would be best to just keep him in the hospital where he can be observed and treated quickly if an infection occurs and so we quickly agreed that if it is best for him there is no reason to take a chance and so he will be in the hospital at least through the next round as well.  Initial talks are that he will undergo two more rounds and that perhaps after the third round we will be ready for a transplant. 

Mason was able to pay a visit today and Cutler’s eyes really open up and smile when he sees Mason walk through the door.  As you can see from the pictures, he is already a very happy boy but it really does elevate when he sees big brother come bouncing through the door calling out his name.  He loves his robot and funky chicken dances and all of the silly faces he makes for him.  We really miss having both of the boys at home, but patience will help us win this battle.

Shout Out For More Attention

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Little Dooneret

Little Dooneret

So I have a very good friend in LA, Jason Muldoon, who had a baby girl born back on June 9th, Samantha Lynn.  Samantha was born with a very rare disease called Auto Recessive Polycystic Kidney Disease.  So rare in fact, Southern California has had only three cases this year.  The disease causes calcified cysts to form on the filtration duct of the kidney, thus not allowing normal functioning of the kidney.

Samantha has been through quite a bit in her short life.  When she was born the medical team was providing oxygen and burst one of her lungs.  She then had one kidney removed to allow room for the stomach to grow, unfortunately the second kidney took up this space and when it was removed it had grown to one pound (1/9 of her total weight).  Samantha had since progressed quite rapidly through her recovery until about two weeks ago when seizures started to occur, but after further inquiry the tests proved that they were actually little strokes.  She should fully recover, but the concern is avoiding the next one, which should be possible by closely monitoring the blood pressure.

The good news of this story is that Samantha was supposed to be moved last night out of the NICU and into regular care on “the floor”.  If all goes well, Samantha should be able to go home for the first time in four weeks, but Jason and Trisha still have a long road ahead of them having to watch her closely and take on the activities that the hospital has been doing for the past several months.  She should be eligible for a kidney transplant once she hits 33 lbs. 

I post all of this not to tug at your heart strings for yet another baby, but because Jason has been so generously there for me with his time over my past two weeks and being inspired by so many messages from everyone out there I wanted to ask that you add one more baby to your list of prayers.

If you want updates, and are a facebook member, please add Samantha Lynn Muldoon.  They are posting daily updates and photos.  Thanks in advance for your support.