Sharing

Jackson is definitely getting an opinion. Annika used to be able to take away any toy from Jackson and he would just lay there and not care. Not anymore!! Today I had both Annika and Jackson in tears. Jackson was crying because Annika took a sippy cup that he was playing with and then Annika started to cry when I told her she had to give it back. Annika is still finding it hard to share her things with her brother. I think that Jackson is becoming more animated since his surgery and tries to reach toys that are on the floor by him and then starts to cry when he cannot get them. It is just exciting for Eric and I to see Jackson do normal baby things and we even like to watch him make his sister mad. Isn't that what brothers are for?

Annika and Jackson playing with the stethoscope together. Annika likes to pretend to be

Doctor Annika and make Jackson feel better.

Jackson when he was in the hospital. He makes even hospital gowns look cute!

2 weeks post-op

It has already been two weeks since Jackson had his surgery and he is doing great. He is still a little painful at times and he still does not want to hold up his head, but he is definitely improving. We have been able to cut way back on his pain medication and he is now basically just taking Tylenol with the occassional Lortab when he seems to be in more pain. I would say that he is back to all of his baseline skills except anything that involves holding up his head and he still really does not want to roll over. Jackson had physical therapy on Monday and he was fitted for a stander. The stander will allow Jackson to be in a standing position so that he will get use to standing and to help strengthen the bones and muscles in his legs.
The only thing that Jackson has not readjusted to is sleeping in. He has been waking up at around 4:30 every morning and does not want to go back to sleep. Today I was actually excited that he slept until 6:30. I really hope that this will end soon and I will be able to get a full nights sleep again. Oh, one more new exciting thing for us is that Jackson actually ate a cheerio today without gagging or throwing up. Hopefully solid foods will be in our future sometime soon!

Home again!!

This morning we got discharged from the hospital!! Jackson is doing much better and not in near as much pain as he had been. Tuesday was the worst for him and he was just miserable all day and the nurses were just trying to get his pain under control, but by Wednesday he was already doing better and each day since he has been improving. Jackson is once again smiling and playing with his toys, although he really guards his neck and tries not to move too much. Jackson has an incision that starts at the base of his head and runs down his neck that is about three inches long. It is hard to find a good position to hold him so that our arms do not rub against his incision. Jackson had great care at DeVos Children's Hospital and we are so very thankful for all of the wonderful nurses that cared for Jackson.

Please keep Jackson in your prayers that he will continue to have a speedy recovery. Please pray that he will not have any infections, cerebral spinal fluid leaks, and that his brain growth will slow and that we will not need to repeat this surgery in the future .

We are so thankful for all of your thoughts and prayers, they definitely carried us through the past week. Most of all we give all of our thanks to God for bringing our precious son though this surgery and for watching over him every step of the way.

Jackson Update- Two Days in Hospital

After the surgery Jackson spent Monday night in the PICU. The main reason he was in the PICU is in the past, he has had respitory problems, and this was for precaution. He was absolutely miserable and in a lot of pain, but as we were told this is a very painful surgery. Both Monday and Tuesday were pretty much like this (he was moved to the regular post surgical floor yesterday.) He has been on a lot of pain medications (morphine, valium, domoral) to subside the pain. The good news is today he seems to have a turned a little bit of a corner and was a bit more responsive. Doing things like touching Sherry's face, tracking with his eyes, and finishing a little of the bottles he was given. He stills looks to be in a trance somewhat and we are hoping that this is medication related. Our neurosurgeon is closely monitoring the wound for infection and any other unforeseen things. A very long week for everyone involved, we are so thankful for our families during this time. Not sure when we'll be discharged, but we will keep everyone in the loop...Thanks for the thoughts and prayers.

Surgery Update

Jackson's surgery began at about 8:30 AM this morning and was completed at around Noon. Currently, we are staying at the PICU at Devos Chilren's Hospital in Grand Rapids. Overall, the decompression surgery was successful for the procedure that Jackson was in for. The neurosurgeon had to remove only C1, which we are thankful for since we were not sure if he was going to have to go down into C2, C3, C4. So in those regards...things went well. As the neurosurgeon put it, Jackson was a patient of "firsts". The "first" patient he has ever had with M-CM syndrome, so he was not sure what to expect when he went in. Just like Jackson's body has hemihypertrophy (one side larger than the other), so was his brain, which the nerosurgeon said was considerable (again not an abnormal trait for kids with this syndrome). Due to the overgrowth of his brain, this caused a lot compression, so basically he had to put in the largest patch he has ever put in while doing this surgery. We are praying that he does not have any cerebral spinal fluid leaks or infections. He seems to be doing as well as can be expected. We will keep you updated as we know more...

Pre-op appointment and children's museum

On Tuesday we had to take Jackson in for his pre-op appointment in Grand Rapids. Since Eric was on vacation we thought that we would make the day of it and take Annika along and also go to the Grand Rapids Childrens Museum.
So first of all we met with Dr. Skarli, our neurosurgeon. He basically explained once again to us the procedure and what we can expect. Jackson will be having surgery on Monday, January 4 at 7:30 am. It will be an early morning for us since we need to arrive at the hospital already by 5:30 am. The surgery is expected to take about 3 hours. I know that I explained the surgery once before in an previous blog, but I will explain it again a little. The surgery is basically done because Jackson's brain is growing faster than he is his syndrome is an overgrowth syndrome). This causes pressure and forces the rear part of his brain (the cerebellum) to push down into his spinal column. The surgery will correct this by removing the posterior portion of C-1 of his vertebrae. The doctor then tries to "pull" on the portion that extends into the spinal column and hopefully he will be able to pull it up without having to remove any more vertebrae. He also makes the opening into the skull (the foramen magnum) larger and he opens up the Dura (the protective lining surrounding the brain) and puts a patch in to make it larger. This is all done to give the brain more room. Everything is then sealed with a bioseal to prevent any leaks. Eric and I both feel very well informed about the surgery. I am sure that we will be very nervous on the day of surgery, but we know that we need to give Jackson over to God. Only He know the plans for our dear Jackson. So on Monday morning as you are getting ready for your day, please say a prayer for Jackson and the neurosurgeon and pray that everything will go well and we will be home again soon. We are so very thankful for all of the encouragement that we have received already.
After we had our appointment we make our way to the Childrens Museum where Annika had a great time. Jackson probably did not have so much fun since I hardly let him touch anything out of fear of germs and him getting sick before surgery. Below are some pictures of Annika playing at the museum and Annika and Jackson looking through a tube with mirrors.