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.

It's not just a straw!

In February, we started speech therapy at Ozark Therapy Institute in Springfield Mo. Our insurance does not cover speech therapy so I figured since we were paying out of pocket I should find the best. From other parents, I heard of this place and how great they were. Sometimes the best word of mouth is from patients themselves!!

My goal for Christian was simple (well simple as in 1 goal)--teach my son how to drink from a straw. To be honest others had tried and I kinda thought it may never happen. Mostly due to the fact that Christian bites everything-including former straws:) To me it seemed like a pretty impossible task yet very important skill!!!

I called OTI, described Christian's diagnosis, mental and physical abilities and hoped that the therapist didn't think my goal was unattainable. Before the conversation was over I remembered that I forgot to tell him something about Christian. . . . "oh and he's blind" (on my side of the phone I'm thinking don't let this be a deal breaker:)) Teaching a blind/cognitively impaired child to drink from a straw could be difficult. Mr. Dan McCool didn't seem to think it was a problem. . .challenge maybe. . . but not a deal breaker!(he didn't say that).

And so we started speech therapy and the quest for Christian to drink from a straw. After about 4 weeks he was drinking from a straw!!! I just about fell out of my chair. Over the following weeks he improved more and more. There are so many technical things that go in to drinking from a straw. Since I'm not a therapist, I can't quite explain it all. But for Christian to round his lips on the straw, suck, and swallow is quite an accomplishment. It was just amazing. I probably sent our therapist way too many videos when he started seeing him make so much progress at home. I never thought I would see him drink from a straw.

So it isn't just a straw. . . it means Christian can safely drink liquids, it means we aren't spending a bunch of money on sippy cups that he bites holes in after 2 days, it means I can give him a drink without him in my lap, it means I can give him a drink with one hand and feed Bryant with the other, it mean we can give him a drink in his carseat, it mean his lips, tongue and jaw are doing different things to accomplish a task. . . .. that's why it's not just a straw.

After accomplishing this I thought . . hmm what now? Well since then we have been working on communication skills. Christian can sign for more and is close to being proficient in signing for drink. We are working on a combination of signs and vocalizing for his wants. This is simply amazing to me. It just goes to show that when you have a knowledgeable, caring, you can do it attitude speech therapist and the tools to know what to do at home . . . much can be accomplished. I hate to admit that it took Mr. Dan to help me believe that Christian was capable and has so much potential (THANK YOU). I will try to get video on here soon.

4th Annual Dodging to make a Difference!!!

THANK YOU -- to everyone who participated in anyway and donated towards our dodgeball tournament. We greatly appreciate each and every one of you who are involved in our son's life!! We had a good turnout and a new adult team won this year!! Can't wait to see everyone next November for the 5th Annual Dodging to make a Difference tournament! Christian will be heading to Sikeston in January for intense physical therapy program.

The Russell Family

a wrong turn sometimes leads in the right direction

It's been awhile since I posted anything but we have been enjoying summer and all that includes-swimming, swinging, out of town appointments, the lake, and vacation at the beach!!!

We went on vacation to Destin, Fl in July. This was our first time to go there and the first time for both boys to go to the beach. The weather was perfect all week!!! Christian enjoyed the waves crashing on him and just relaxing (i pretty much took a therapy break and so did Christian:) Bryant enjoyed playing in the sand until he put it in his mouth and eyes. Woops!

On our way home we took a wrong turn for some reason and ended up traveling towards Alabama instead of Mississippi. This was quite annoying at first due to the fact that our children don't travel well and this wrong turn was going to add on an hour probably. Well there was really no turning back so we continued on. About 3 hours in to the drive we stopped at Wal-Mart to feed the boys and I noticed Christian was acting funny --a.k.a having a seizure. We gave him his medicine that should stop it. We started back on the road thinking that the seizure had stopped. Ten minutes down the road we noticed he was still having a seizure. The closest hospital was about 5 minutes down the road-thank goodness!!! We called ahead to notify them we were coming. Well long story short--that got the seizure stopped and then flew Christian on to Children's Hospital in Birmingham. Of course, while in the first hospital there was plenty to watch as we waited for the helicopter. There was the drunk guy who kept asking for his drugs and wondering around (very amusing) and the older lady that just wanted to know what was wrong with Christian. I replied "he has seizures". Then she said "no, what's really wrong". I assumed she wanted the answer "he has cerebral palsy". Oh man!! The staff there was great! It was rather odd to watch them wheel Christian away and watch them load him in to the ambulance while we had to drive to the hospital.

Children's took great care of him. We stayed overnight for observation and left the next day. My night however was a buffet of sleeping arrangements. There were only chairs in his room and the waiting room so I slept on the linoleum floor for a while then climbed in bed with Christian then tried the chair. None of those options worked for long. So I finally laid myself down in the hospital lobby couch. It was so comfy till 5:30ish when security woke me up. He says" ma'am you can't sleep down here". woops! I was just testing out all of my options from 12:30-6am:))

And so I say all of that to say this--I'm glad we made that wrong turn which led us to the right hospital!! God knows how to make a detour in to a correct destination!!

Lessons of life by Christian

From time to time God uses Christian to teach me some profound things that maybe I have forgotten or maybe God just wants to reassure me and share with others. I love these moments. I think it's also one of those "learn from your trials" moments. So I thought I'd share in case you need to hear this today.

For the last week or so Christian has been battling allergies like many of us. The difference is that the drainage just . . .well drains. He can't spit or blow his nose. So this has left us with him gagging easily and then sometimes throwing up. We've never had this happen to this degree so of course it's our new bump in the road that we are enduring. Any time I(or Eric) hear him start gagging I jump up and run-yes run to him, roll him to his side and pray that he doesn't throw up. It is necessary to get to him quickly so that we can assist him since he can't sit up or roll over on his own. And if he does throw up we have to change his clothes, the sheets, bathing him and get him back to sleep. This has occurred several times at midnight or the early am hours. I know many of you have had the "throw up in the middle of the night" scenario. The reason I was left pondering our situation is because it has been happening multiple times. I'm amazed at how quick my husband and I can move in the middle of a dead sleep when it comes to helping our son.

For some reason, I started to think about how our aid to Christian is just like God's love and swift attentiveness to us. When we face a trial or are in trouble, He runs/sprints to us as quickly as possible to help us or comfort us. He would never look at us and say umm just a minute-just as we would never do that to Christian or Bryant. There's never an hour that is too late or early to hear our prayers. While we often pray with urgency, God in turn answers with urgency. Giving Christian new clothes and a bath, reminds me that God in a similar way not only runs to us but helps with what we need and cleans us up-and gets us back on track with life. I'm so thankful that I have a God like that!! After typing this though I thought about how in Deuteronomy it says that He never leaves us so I guess that's even better than "running" to us.

Maybe you needed this reminder of how much you are Loved by God or maybe not but thought I'd share.