you never know

Well we are 2 weeks out from surgery and overall it hasn't been bad. We are going to work on getting his legs going and pray for the seizures to stop flaring up.

We stayed at the Ronald McDonald house which has been wonderful. It's a year old and very nice. Groups come in every night and make dinner for the house. This is such a treat for the parents staying here. Most of their kids are preemie babies in the NICU, having surgeries, or sick in the hospital. There are families from all over....the Caribbean, Belize, Illinois:) The fact that you don't have to worry about eating out or getting food from the store is so nice. Each room has a daily chore, you do your own laundry, and clean your room. I've met some parents who have kids with cerebral palsy like Christian. It's been nice to talk to them. A couple of moms had multiples and lost some of the babies. You never know who has been thru what..

Ranken Jordan is an amazing facility. It is set up as a pediatric rehab hospital. There are infant-23yr olds living there. They have a 24/7 staff of nurses, doctors, aides, kitchen staff, and therapists. Not to mention tons of volunteers! During our week there, I noticed that the kids who were about 5th grade to college age were either there for reasons of medical need due to conditions like Christians (CP, neurological issues) that they were born with or some were there because of injuries due to accidents. I noticed one boy and mom that arrived about our 3rd day. He seemed to be about 12. He had been in an accident(don't' know what kind). He had a long scar on his shaved head and half his skull was missing. He had a couple of machines attached to his wheelchair which was tilted for his sitting position. His mom carried a bag with his medical necessities. He was in music therapy with us and enjoyed the piano. He would tap it with 2 fingers. I never heard him talk. His mom seemed quite and took everything in as the therapists talked and helped her son. At some point a therapist asked what he liked to do and his mom said "he used to like building things with legos...he was good at that" You could feel the sad tone of the way she knew she was talking in past tense. I thought how incredibly difficult to one day have that son and then another day be thrown in to this medical world and start rebuilding your son's new life. I imagined the other parents who had walked thru those doors..the ones whose daughter became paralyzed after a diving accident or whose 5yr old couldn't walk or talk because someone broad sided their vehicle (true stories). I also know that there are amazing things done at Rankin Jordan with kids to regain walking, sitting, talking,.....

Just remember to be thankful for everyday with your kids and not take their abilities for granted! And don't sweat (or complain about)the small stuff.

Pictures-these are from the past yr. the one with c in a yellow shirt is the first time i got them together while c is sitting by himself (huge accomplishment)

ready to go home

Well Iofficially hit my point of-i want to go home-on friday. Christian had seizure that morning so after that he didn't do too hot in ot since he was tired. They had to fix his back brace because it was digging in his ribs while sitting. And I"m just overall ready to be home where everything is where it is and easy access. We then had to skip nap to go to the kidney doctor for 6 month check up. He still has kidney stones due to the ketogenic diet (which helps control seizures). Actually he passed several thursday night. Nothing new to do, they just monitor his kidneys. We would have to stop the diet to stop the stones.

He did pretty good that afternoon in pt. the picture is of him sitting with leg braces on. These give his hamstrings a really good stretch. Before the pump he could not have done this. He did some pretty good standing also. I tried to get videos on here but somethings not working.

day 7,8 and matters of the heart

Every day gets a little better-bruising is down, times of uncomfortableness is more spread out, rash from tape is better,happier! In OT, he is doing some great sitting with little assistance, working on grasping puzzle pieces, switch work-which mean using a switch to operate a toy and then adding another switch that does nothing. He has to figure out that only the 1 operates the toy. He definitely recalls by memory where the correct switch is. Sometimes gets stuck on the one on his right side. He also got to do some swinging. loved!!!

In PT, he did some standing which has gotten better. He wasn't wanting to stand at all until 2 days ago. He is so used to using his "tone" to stand and we took that away. Now he has to build up the muscles and allow the brain and body to get used to standing without tone. Tried walking in a walker but got nothing from that. He is tolerating being in his stander so that's good!

There are 2 other girls in the day program and so we eat lunch together and talk which is so fun. They are 9 and 12. Such personalities!!! One of them talks about Bryant everyday. She met him last week. They like to talk to Christian too! I will miss them. The 12 yr old has the same OT as Christian and I said she gave me some good ideas to do at home with him. She said"I'm glad my momma don't come here" Luv it.

MATTER OF THE HEART:
Anytime I go away for things like this I just know that there will be people that I run in to that I'm supposed to-divine appointment is what I like to call it. It almost excites me! I tried to be aware of that and not let opportunities for God to use me pass me by. So it happened in the kitchen...A young couple had their first son early and he is in the NICU here and has a heart defect. So she's telling me about it and I just know that this is where I'm supposed to share what God did for Christian's heart...in my mind I'm thinking ok this is it! And so I shared how Christian was born with a heart defect and the doctor said it would never fix itself and how at 3 months old we went to the doctor for our monthly visit and they did an echo and the technician says "you said he had ebsteins anamoly?" and i say yes. And at that moment you could see this look on her face like something didn't match up. She continues and finishes and we go wait for the doctor. He comes in and says "I don't know how to explain this but his heart is perfect. There's nothing wrong with it anymore. This has never happened." And I say "well we believe in the power of prayer". This was just one of our miracles in the last 5 yrs. And so I told this young mom to just know that God is working and we will be praying for him! I think 5 yrs ago God knew this "matters of the heart" kitchen encounter would happen:) We still have the drawing that the doctor gave us explaining his heart condition. It reminds me that nothing is too big for Him and He knows way more than we do and the whys of it all. Also a funny fact is that on paper doctors would look at his heart defect he was born with and say "that doesn't really match up with the other stuff that happened". And then they always say "so he doesn't have this anymore? "no" Did he have surgery? "no". :)))

day 6 pump

I didn't post over the weekend since we didn't do any therpy and nothing new was happening. Christian did fine over the weekend though. He even stood up 4 times for me.

Today he started occupational therapy (ot) and physical therapy(pt) at Ranken Jordan. In OT he worked on the swing, putting puzzle pieces in place with a pincer grasp, switch work with the bubble column. In PT, we had to get his back brace adjusted because of the way it was hitting him at his legs and the pump. Besides that he was in the stander for 15 mins and did great. He did not act like he was in pain during any of these activities. The only downside to today is that Christian is allergic to the tape that is used to cover his bandage. He has a rash all over his chest from it. They changed tapes today. The incision is healing nicely, swelling and bruising has gone down too.

One of the volunteers has a service dog and Christian pets him everyday. The minute he touches him he starts verbalizing and gets so excited! It is amazing what animals can do.

day 4 pump

Christian finished yesterday beautifully!! No problems with pain and we weaned down to just Tylenol every 6hrs. We picked up our 1 year old Bryant yesterday. He has been staying with my mom and dad. I'm not sure that he even wanted to see us because he likes them so much (which is great)! thanks mom and dad and granny!!

We contemplated waiting one more night to get him .....and probably should have. He usually sleeps thru the night but was up twice last night and woke up Christian at 3am which is when his pain med would have ran out. We wanted to see if he would sleep thru the night but....thanks Bryant:) They both went back to sleep thankfully. I prayed very hard that they would just go back to sleep:)

RANKEN JORDAN-this is a pediatric rehab facility in St. Louis. It is very nice and has anything you could need. Some patients stay there for weeks or months while others just have outpatient therapy. Christian is in there day program. He will go from 9-2 and receive OT and PT. In between those times of therapy he will get to participate in music therapy or art or recreation. Lots to choose from! He was also fitted for a short back brace today that he will where for 3 months. It keeps him from doing too much twisting motion which can make the catheter come loose. They won't it to be good and secure before he does too much of that.

TODAY-Today he has acted a little fussy, guessing from soreness of being up more. However he tolerated his pt and ot evaluation. They even put him on his stomach!! yikes! the pump as well as an incision is on the stomach. It was only for a couple of minutes but this made me nervous. They basically measured his tone(tightness in muscles) and what he could do to see what they need to work on next week. He and Bryant are napping now..hallelujah:)

We will just relax this weekend and then get going Monday. Thank you all for your kind words and prayers, it means more than you will ever know.

Day 3 pump

Today was another good day. We actually were discharged from the hospital today. We will start his therapy program tomorrow up here. We are considered to be in the day program. So we will go from 9-2 for therapy and for the doctor to do any adjustments on the pump. Then we will be back at the Ronald Mcdonald house.

Today they changed the dressings on Christians incisions and everything looked good so that was a relief.

More to come.. . .

Scars

So I had mostly dreaded this whole surgery process months and weeks before the actual day. Chrisitian has never had surgery so we haven't had to deal with the cutting open, healing process. And on top of that having a pump put in which is a foreign object in your body. So of course all of those things are so unknown. My biggest hang up was the fact that we would be putting 2 scars on his body. I think it makes me feel so bad because he will never look like he does prior to this. Instead of a scar fee stomach and back, there will be 2 obvious scars there. I'm not knew to the scar world, I have several from childhood accidents. It's just different when you are deciding to do something to your child that will leave scars. I find it odd that this was my biggest "dislike" of doing this. And once again God has used this. So as I was pondering on this scar thing last week I was reminded that God also had to watch his Son receive scars and keep them. Of course Jesus's scars are for a whole different reason but still it reminds me that God does feel what we feel sometimes as parents. It was like God saying "i know Robyn, I know". I'm so thankful for the scars that Jesus wears for my sins...

Time and time again I am reminded that He knows and is with me and is never leaving! I know that these scars are temporary on this earth and hopefully in the end those scars will be a minor thing compared to the good things the pump is going to do for Christian. After all, aren't scars supposed to make guys look tough:) He certainly is a tough one!

pump day 2

The first night went ok. He did well thru the day-played with toys, happy, eating. . . then around 8 pm tried to change his diaper and he was on the end of that round of pain meds and boy oh boy!!! He was in so much pain. He was screaming and grinding his teeth. We finally got that under control and he slept until 3 am and was in discomfort again. It was time for the next pain meds anyways. So he is still sleeping as of now (11am).

Yesterday his legs were looser than normal but not where they will need to be. They are not messing with the baclofen dosage right now. That will be done at Rankin. He will still not be able to sit up more than 45 degrees today. In the morning he will be able to get up.

In the meantime hospital life is as good as it could be. The staff is wonderful, family room amazing, and bed pretty comfy in his room. Of course, there is the constint flow of people. But they are just doing there jobs. O how I long for this to be over and be home. But this is the journey!


REST OF DAY 2 ADD ON:
Christian had a great day today. No obvious signs of pain-ate 2 and half meals and played. I just left to get some sleep while eric sleeps at the hospital tonight. As I left, Christian was sleeping. Hopefully he will have a peaceful night sleep.

Baclofen pump implant

Christian had his pump implanted today (jan 3). The surgery went great and he is sleeping right now. Hopefully when he is fully awake he will not be in too much pain or confusion as to why he has this pump now.

We are staying at the Ronald McDonald house in St. Louis. They are so accomodating. We are very thankful for a place to stay and supper provided. I will keep you updated as to how he is doing.

Sleep was difficult last night. I think there's always the concern of -am making the right decision for Christian? how's this going to go?...
Eric and I remind ourselves that we are doing what's best for his quality of life.