The Joy of Jacob: Big Boy Bed

Tuesday, July 3, 2012

Big Boy Bed

Yay!! Jake's big boy bed got delivered yesterday!

Stretching out and kicking around

As soon as we set him down to test out his comfy new bed he had several great big smiles. We decided to get Jake a trundle bed, so that Josh and I have the ability to sleep right next to him if needed. Currently, Jake wakes up at least once a night and at some point we always end up moving him into our bed. Jake loves to be snuggled and usually just wakes up so that he can be next to us. We love our snuggle time, but it's a pain in the middle of the night having to move him and the feeding pump. We felt the extra bed in his room would be a good alternative and will probably be helpful in the future as Jake's health needs change. For now, we're just wondering...where can we find some cute sheets for kids (nothing too crazy, but more fun than just plain green)??

Wondering why Momma is taking so many pictures...

Jake's crib is being passed down to his baby sister-to-be and has already been moved into the baby's room. Josh and I spent all weekend clearing out the extra room (a.k.a. Josh's "Man Cave") and re-organizing things in the office too. Jake was such a good boy all weekend and played quite a bit on his own while watching us scramble around. We even had a bit of fun hiding Jake under his stuffed animals -- doesn't he look thrilled?? Ha! Ha!

His face is priceless in this one!

4 comments:

LGJuly 3, 2012 at 11:22 PM
Hahahaha LOVE the stuffed animal pic <3
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AnonymousJuly 4, 2012 at 4:28 AM
Love that pic!!!!

Nanci Glassman
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Cathy JohnsonJuly 5, 2012 at 7:25 AM
Haaa! Love that picture - that face! "Really, Mom? Again with the silly stuff?" Just priceless. And awesome, bed, Jake! Can't wait to see what kind of fun sheets Mom finds. :)
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AnonymousJuly 15, 2012 at 11:05 AM
he is soo handsome! i love his new bed-pottery barn kids has our favorite sheets-so, so soft and cute:)
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Niemann-Pick Disease

Niemann-Pick Disease is a lysosomal storage disease, which causes fatty substances called lipids to collect in the cells of the liver, spleen and brain. The disease is genetically-inherited, but it is considered a recessive trait. In order for a child to have Niemann-Pick Disease, both parents must be carriers of a genetic mutation causing Niemann-Pick. There are three main types of Niemann-Pick Disease -- Types A, B and C. Types A and B are also referred to as acid sphingomyelinase deficiency (ASMD).

Genetic testing revealed that Jacob had Niemann-Pick Disease type A/B (also referred to as an intermediate form), which is a combination of the most severe and the least severe form of the disease. His body produced a very minimal (3%) amount of an enzyme called acid sphingomyelinase (ASM), which helps break down fat. Since Jacob’s body didn’t produce much of this enzyme, his body had great difficulty getting rid of ASM. The sphingomyelin had nowhere to go so it accumulated in his cells, eventually causing cell death and the malfunction of major organ systems.

Those with Type A typically live to be only 2 to 4 years of age, whereas, patients with NPB generally have little or no neurologic involvement and may survive into adulthood, though there may be health complications. Type B individuals usually have enlarged livers and spleens, and respiratory problems are common. The enlargement of organs and the respiratory problems can cause cardiovascular stress. With Jacob, it was unknown what the exact progression of his disease would be. Shortly after Jacob's diagnosis, it became apparent that his disease was presenting in a more aggressive form and he did have neurologic impact. There are approximately 1,200 cases of type A and B worldwide with the majority being Type B. Unfortunately, there is currently no treatment or cure for the disease and care is mostly supportive.

The Joy of Jacob

Tuesday, July 3, 2012

Big Boy Bed

4 comments:

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