Rested up

We had a good night last night. We gave Gage some of his drugs around 9:30 and he was out by 10. We got to sleep all night in our own beds- and soundly, too. Apparently I talked in my sleep. Gage started stirring at around 7:30 this morning so I went to get him....and found a stinky, unwelcome surprise all over him and his bed. It was awful. Tony had to clean most of it up because I was afraid I would hurl. Gage had to get a quick bath, which didn't make him happy when he wasn't really awake and I'm sure sore. His dressing had to come off (it was supposed to today anyway) because it was dirty, too. That wasn't fun. Poor baby. I'm glad he wasn't in bed with us last night!!!

He sat with me for a while this morning and had some breakfast, and now at 9:45 he is asleep again. His drugs really knock him out.

We really, really, really appreciate everyone- your prayers, calls, messages, goodies, etc. We really feel so blessed!

We're home

and so glad to be. We're tired so I'll post more later. Just wanted to let everyone know!

Still here

The nurse says that there are like 5 patients waiting to be discharged and that they haven't heard anything. Something must have come up. Oh well. We were planning on staying until at least tomorrow anyway, so getting out late today will still be a bonus.

Cross your fingers

2 people (a nurse practitioner and a surgery resident) have mentioned the possibility of us coming home this afternoon!! We need Gage's neurosurgeon to confirm, but it's possible! I'll up date when we know something!

Good Day

I sit here now in our private room, with our queen sized Aero bed blown up and ready to go (you're a life-saver Matt!!), and Gage happily watching Signing Time for the 4th time today. He's about to go to sleep, I think, and we are too. It was a really good day today. Gage made progress by leaps and bounds. PT came in this morning to work with him. He moved his head around some and Gage was NOT happy about that...but after the PT left, I guess he decided that it wasn't so bad after all and began moving it back and forth on his own. We even went to the play room where he sat on my lap and held his head up by himself and jammed to the music he was making on the little keyboard he was playing with. He took a LONG nap after lunch and then PT and OT came to see him again. He wasn't happy about that either- he had been asleep for so long in the same position that his neck was stiff. He cried and the PT set him up on a bench while the OT played in front of him. I was proud when she said "he has EXCELLENT fine motor skills" (yes, I know, thank you, thank you :) ).

Later, Matt and Owen brought us supper and Gage and Owen rode in the wagon together. It was sweet and Gage really enjoyed getting out of the room and riding around.

Here is a pic I got of him yesterday with his "pone" and fire hat. He was a little doped up...

And today when he decided throwing his legs down on the bed was great fun

On the floor

Forgive this being one really long paragraph. I haven't been able to connect on my laptop and this compter wants to post the entry when I hit enter instead of moving the cursor down. We are settling into our (tiny) room on 4D now. We had a rough night last night, but things are better now. The baby in the room next to Gage had a lot of alarms in her room that kept going off, so we were up about every hour last night. Tony slept in a waiting room and I stayed with Gage. It's nice to be out of ICU but I wish we still had a private room. We don't have any neighbors right now, but I'm sure that will change. We are on the list for a private room...we'll see. If that doesn't pan out today, Tony will stay here and I'll go home tonight to sleep. My mom is here, so I'll just go with her. Gage is more himself now than he has been since surgery. He's currently watching Cars while talking on his "pone"(call button) and wearing his fireman hat that Daddy brought him back from eating at Firehouse for lunch. He hasn't had any pain meds in a while and still seems to be feeling well. We talked to the neurosurgeon this morning and he was pleased with how things have been going. A PT will come work with him somtime today or tomorrow on his neck range and will probably try to get him sitting up a little. Speaking of PTs, his usual one came to visit today. It was good to see her, although it was at a time when Gage wasn't too happy. I guess that's all for now. We're pretty ragged but hanging in. The people here are awesome. I've gotten several emails,comments here, and texts from some of you and want you to know that I appreciate every one. The hospital is still wanting to block blogger so I am not always able to approve comments and such. If you post here, I get them and they'll show up eventually. I need to go, but we really appreciate everyone's prayers and concern!

Surgery update

The hospital has blogger blocked, but I was able to get to it kind of indirectly to post (YAY!). Surgery went really well. We arrived here at about 5:30am and after doing all of the pre-op stuff, he was taken right at 7:30. He was in for about 3 hours. They did the Chiari decompression first. The doc said that when he removed the bone that the part of the spinal cord behind immediately spread out, so it was under a lot of pressure. I was worried that we hadn't made the right decision in agreeing to that part of surgery since Gage wasn't having symptoms, but now I know we made the right choice. After getting done with that part, he started on the cyst. That area was also under a lot of pressure and there were apparently some adhesions to unstick. He said that after that was done that the fluid was flowing freely again.

We got to see him about 45 minutes after he came out of surgery in the PICU (he came straight here instead of recovery). When we first saw him, he lifted his arms and said "mere" and I was allowed to pick him up. He sat in my lap sleeping for a while, but would cry every time I would shift so I put him back in bed, where he seems much more comfortable. He's asleep now and seems to be comfortable. His little throat is sore from the tube and I'm sure his neck hurts, but he looks better than I anticipated. He has 2 tiny little dressings- one right at the base of his skull and the other just an inch or 2 lower (much higher than I thought).

Thank you all for your prayers and offers to help in one way or another. We are doing well now that it's over. I don't think visitors would be a good idea right now- we can only have 2 people in the room at a time right now and no food allowed in here. I'll update again tomorrow and hopefully we'll be on the floor in a (private) room... We're hoping for private anyway!

Surgery time

Just got a call from ACH. Surgery will be at 7:30 Monday morning and last approximately 4 hours. I'll update here as soon as I can after he's out of surgery and in a room.

Next week

Not much going on right now, but I did want to say a little about next week. Gage's surgery is Monday. We won't know what time until sometime Sunday when they call us for all of the pre-op stuff. I'm guessing it will be a lengthy surgery since he is having to do 2 separate surgeries at one time, and they are both kid of tedious. I will update here ASAP, so check back often next week if you want to know what's going on. I think this will be easier than sending out a bunch of emails. We are taking our laptop and there is computer access in the rooms. Gage will be put in the PICU for a night or 2 after surgery, then be moved to the floor for the duration of his stay. We expect to be there about a week, barring any complications. I don't think Gage will be up for visitors until he is out of the PICU. I'm not sure about the visitation policy there anyway.

I don't know exactly what to say about how I feel about all of this without making you all think that I'm not dealing well. I am, really. I just already know it's hard to hand my baby boy over and know he will come back to me grouchy and in pain. I know he is in good hands, though- both those that will be physically working on him, and those of his Heavenly Father who will be overseeing it all. We appreciate all of your prayers and we promise to keep you updated next week!!

Picture post

Memorial Day weekend, Gage and I went to my Dad's house for some Ford Family Fun. Here are some pics from that:
Wedding chat:

Tatter must have said something really funny:

Photog Cherry:

Bailing off of the side of the pool to Uncle Dusty:


This past weekend Gage and I went with Nana and Pops to meet Uncle Scott and Aunt Allie in Memphis:

Pops with his boys:


Mamas and babies at the Memphis Zoo (which is awesome, BTW).
Sleepy boys:

At the Peabody Hotel. Silas seems to close his eyes in every pic I take of him!
Gage loving on Uncle Scott and baby Silas:
Nana and Pops with Gage and Silas:

Pictures speak louder than words

Ok, so just a few words:
Early January
a little sensitive to smells, but not too bad

More Surgery

Gage's PT let me know a few weeks ago that she was concerned with his lack of progress, and even regression with his walking. It seemed that he was getting weaker and dragging his feet in his walker. We talked to the nurse at Spina Bifida clinic and got an MRI scheduled to check things out (and a new neurosurgeon in the process). The MRI was Wednesday and we saw the new neurosurgeon yesterday. Gage has 2 things going on that require surgery.

First, almost all people with spina bifida have something called a Chiari II Malformation. This is where the brain stem gets pulled too far down into the spinal column and it makes the cerebellum misshapen. We saw that on ultrasound before he was even born. The neuro ordered a flow study with the MRI, to see how much cerebrospinal fluid (CSF) was moving through the opening. Turns out it's not much at all. He will go in and remove part of his 1st couple of vertebre to give the brainstem room.

Second, and what's probably causing the problem, is an arachnoid cyst at about shoulderblade level. It's pressing on his spinal cord and probably causing his leg weakness. It's made up of stuff that's supposed to be there, so as far as I understand it, the surgeon will be unsticking it from the spinal cord. This will at least halt the damage it's doing and hopefully he'll regain the little bit of function he's lost.

All of this will require a night or 2 in the PICU and 3 or 4 nights on the floor. We thought surgery would be next Thursday, but apparently that day was overbooked, so as of right now, it will be June 22. We have requested that it gets moved up if there are any cancellations. This has been affecting him for over a month now. As we see it, the sooner we can get it taken care of, the better.

Of course we hurt to think about Gage having to have surgery again. This will be #6 in less than 2 years for him. We know that he's in God's hands, though, and this needs to happen. We appreciate everyone and their support and prayers! As Tony has said, it is what it is.

I'm a CPST!

Last week I took a 5 day course to become a Child Passenger Safety Technician. It was SO much fun! I found out that the AR State Medical Board has approved the course for OT continuing ed, so I am done with my hours for the year FOR FREE! YAY! Saturday was the end of the course, and the public car seat check event. It was sponsored by State Farm and held in the Dillard's parking lot of McCain Mall in Little Rock. Getting your seat checked by a tech is FREE and SO worth it. There was not a car that came through that didn't need some sort of help. I think we only saw one or 2 that we didn't hand out new seats to due to the seat being recalled, expired, damaged, or inappropriate for the child's weight, height, or age. The misuse rate nationwide is between 80-90%. Here in Arkansas, it's 90% or above. Everyone Saturday definitely left safer than they arrived. I look forward to participating in future seat checks and will hopefully take the special needs class for next year's CEUs.

So moms, dad, and grandparents, if you haven't already, find a local CPST and get your seat checked!!! A good CPST will show you how to install your seat, then will uninstall it and make you do it. We're not car seat installers, but educators. We want YOU to be able to do it and do it correctly every time that seat is used. You can find a tech here.

Suffering

Now that I've recapped vacation and identified the mystery plant as a weed, I am ready to write a real blog entry about a subject- not just an update.

Last week I read a great article about a classy athlete who didn't let fame go to his head. He took time for others when he could have thought "I'm too important for this". I was impressed. In the article was this statement

"They left at 7 a.m. Saturday morning and got home at 2:30 a.m. Sunday, and while that is a long, hard day for anyone, it was especially draining for a 6-year-old who suffers from spina bifida."

I am not the political correctness police. I think writers often use more colorful terms in their writing to convey a certain emotional mood, and that's fine. That phrase "suffers from spina bifida" struck me, though, and I have thought about it a lot since I read that article.

Gage does not suffer from spina bifida. He has spina bifida. He lives with spina bifida. As our friend Matt says of his son Owen, he is blessed with spina bifida. He does not suffer. People who have cancer often suffer. People with Aids suffer. People who lose loved ones can suffer. Gage does not suffer.

I am thankful to all of those who came before him, all of the doctors and nurses, all of the researchers who have made it so that Gage need not suffer with spina bifida.

I mean really. Look at this mud-splashed face and tell me this child is suffering.

Plant I.D.

I need help identifying this plant. Is is weed or something I should keep? It has thick, fleshy, waxy leaves...almost cactus-like, and is spreading like a ground cover. I think I remember little pink flowers, but I'm not positive on that. I saw something similar today at the nursery, but it wasn't exactly the same and I couldn't find a name on it. Anybody know?