Our Hope

By sharing our story and our experiences with this birth injury we will hopefully educate people. Knowledge is power. Our hope is that you will read this blog, share it with your friends, and they will share with their friends. Then in some small way we have prevented other families from having to go through what we have.

Wednesday, May 27, 2009

A Home Away From Home

When we took our trip to Philadelphia we were blessed to have my Aunt Connie two hours away in Maryland. We stayed with there for Saturday and Sunday and had a wonderful time. We did need to have a place to stay in Philadelphia the night before we were to leave to come home. We were very fortunate to get to stay in the Ronald McDonald House that was right by the Shriner's Hospital. We were hoping to stay there on this visit so we knew if we wanted to try to get our names on the list for when Jadon would perhaps need to come back out for surgery. We did not know what to expect but what we found was far beyond our expectations. This particular House was just built last year. It has fifteen rooms and it is full all the time. When we arrived we had some paperwork to do and then we were given a full tour of the house. We were shown the exercise room for parents, the rec. room for older children complete with a pool table, a fusbol table, and a juke box. There was a game room that housed the Wii, Xbox, and Playstation 3!!! You just had to go to the front desk to sign out the games. Each of the three floors had a community family room with couches and comfy chairs. These areas also had several rocking chairs for rocking babies, baby swings and exersaucer's. The community family room on each floor had a computer with internet access and the whole facility had wireless internet if you had your laptop with you. Each floor also had a laundry room with a couple of washers and dryers for the families who are staying for an extended period of time.

We arrived just in time for dinner which is served by voluteers, usually a family or group who brings in a complete meal for the entire house. The kitchen was open for use 24 hours a day. There were dishes and everything you would need to fix a meal. The only requirement was that you clean up after yourself. There was even a fully stocked pantry (mac n' cheese, spaghetti, etc.)that any guest could use. Any of the juice boxes, milks, etc...in the fridge were also help yourself. There was a great play area for little kids with a dress up area, a grocery store, and a lego area. I wanted to go play!!

When we got to our room we were even more amazed. The rooms were very large. I have included some pictures. There was fridge in each room, a t.v. and dvd player. You could go down to the front desk and they had movies for kids and adults that you could check out. The beds were sleep number beds!! We were excited about that! They even had Pack N' Plays for the babies! Because the facility is almost completely run by volunteers they ask that you vacuum your room, clean your bathroom, and put your towels and linens in a laundry basket before you leave.

We thought that it was a very warm and comfortable place to stay. It was not only the environment and the wonderful staff but just knowing that everyone there was going through something similar to you. We did not know anyone there yet we shared a kinship with them. You felt safe there. All of that for $15 a night! I will always put my change in the Ronald McDonald boxes when I see them. I have also read that when the new addition to the Children's Hospital of Illinios is done it will include a Ronald McDonald House. I am hoping this is still true. I plan to give back. I would consider it an honor to provide meals or any other type of service when it opens. I just wanted to share our experience with you. On this journey my eyes have been opened to many agencies and services that I knew existed prior to this but had never investigated. I am learning that they all play a vital role in supporting the well-being of the families in need and I am amazed.

Monday, May 18, 2009

Jadon's visit with Dr. Kozin in Philadelphia.

Written by Matt:
We saw Dr. Kozin this morning. We left Connie & Les' house at 6:30 this morning and by the time we got through the traffic, found the parking deck, changed Jadon, made it through registration, and took the elevator to Dr. Kozin's area, it was 9:58 am. I could have slept two full minutes longer this morning. Darn.

First a Dr. Jeffry Johnson came in and introduced himself as a "Fellow of Dr. Kozin's". JJ as they called him took down all of the information he could get out of us about Jadon. Everything from how the pregnancy went to the delivery and then to the progress we had seen this far. JJ then went to get Dr. Kozin and within about 20 minutes, we had the entire surgery team in the room with us. This was 6 doctors, Dr. Kozin's personal nurse, and the physical therapist. JJ reported the info he had taken from us to the group while Dr. Kozin played with (examined) Jadon. They said they would be more than happy to preform the surgery there, as he gets closer to the 6 month mark. We really liked what we saw of the entire team. I told Dr. Kozin that Dr. Park in St Louis had said we shouldn't expect any movement from Jadon's shoulder, ever. Dr. Kozin said he would not agree with Dr. Park's assessment. He thinks that there is a good chance that there is enough nerve intact to graft onto. Especially since there is no damage to C8 (allowing him to grasp with his fingers and move his wrist). He drew it all out on the paper on the exam table. I tried to take a picture, but it turned out a little blurry. I attached it below. Looks more like ET than Jadon, but it shows the vertebret, C5, C6, C7, C8, & T1 (top to bottom).

He said that he does not believe Jadon's eye is Horner's syndrome. There is not a noticeable difference in pupil size, and in blue or green eyes it should be very easy to tell. Very hard in brown eyes but Jadon's are blue. He didn't have a reason for Jadon's "squinty eye", but did not aggree that it was Horner's. That means that T1 and C8 are OK. The damage was done to C5, C6, & C7 making this an "Extended Erb's Palsy". Typically, Erb's Palsy only affects C5 & C6. He really won't know how much damage until they are in there during the surgery. He wants us to schedule the surgery for the late July or early August timeframe and then cancel if we see any movement of the bicep before then. That will give his nerves the max time to heal on their own before irreversible muscle loss takes place.

After meeting with the team, JJ took us down to exray to do a "flouro". This is some kind of a low radiation moving exray. This was so that we could see the nerves that cause the diaphragm to move. These nerves are very close to the damaged nerve bundles. Jadon's right lung did not seem to move the same amount as his left when he cried for the moving exray. This is something to watch, and could cause need for a followup surgery as he gets older. It is interesting that the Dr. in St Louis ordered a still exray and determined that things were fine in this area. Dr Kozin said that the still xray is worthless for determining the health of these nerves.

Before we left, we met with a physical therapist who went over the exercises with us again. She also made a splint for Jadon's hand so that the fingers and wrist will be held extended instead of curled up. He is to wear it only when he sleeps so that he can have the chance to move those fingers when he wants to. Oh, and the MRI that we have scheduled in Peoria is not needed. Dr. Kozin said his team no longer uses the MRI because they have had too many cases where the info is not correct or really hard to read. They gave up on MRI's and just wait until they go in during surgery. MRI's just did not prove to be worth the risk and trouble. That's it. All we know. Seems like a little more upbeat diagnosis than when we left St Louis.

Friday, May 8, 2009

Jadon's Itinerary

So here is the things that are happening in the next two weeks:

Tues. May 12 @ 1:15 meet with Early Intervention services (state) for evaluation to use their services.

Thurs. May 14 @ 2:00 Physical Therapy at St. Joe

Sat. May 16th @ 6:00 am fly out of Peoria to Chicago then Philadelphia

Sat. May 16th @ 12:00 land in Phili, rent a car, and drive to Gaithersburg, MD to stay with Aunt Connie and Uncle Les.

Sun. May 17th- Hopefully check into the Ronald McDonald House in Phili.

Mon. May 18th @ 10:00 Appointment with Dr. Kozin at Shriner's Hospital.

Tues. May 19th @ Depart from Phili and arrive home at 5:51 pm.

Wed. May 20th @ 8:00 MRI of c-spine at St. Francis

That's all for now!

Thursday, May 7, 2009

Another reason to love the Cubs!

I just found another reason love our Chicago Cubs!! I was on a website called Two Little Monkeys. It was started by a family with a child that has an OBPI (Obstetrical Brachial Plexus Injury). Their child was treated at Shriner's in Philadelphia and they were so grateful that decided to find ways to raise money for Shriner's. They also find ways to educate people about OBPI's. I was reading about their annual fundraiser and on the page that listed the contributors for the silent auction the Cubbies were listed. The silent auction raised $10,000 for Shriner's. It made me feel very proud that the Cubs were a part of that and I just thought I would share.

Wednesday, May 6, 2009

Have an appointment at Shriner's finally.....

Phew! I am worn out from making phone calls day after day to get things done. Finally today we have a date to go to Shriner's in Philadelphia. We have an appointment with Dr. Kozin on Monday, May 18th at 10:00 a.m.. He was nice enough to work us in between surgeries that day. I am a little intimidated by the "list" that is coming in the mail for me to take care of, along with a packet of forms. Maureen said that just a few of the things I need to bring are: birth certificate, immunizations, SS card. Fun, fun. But woo hoo we finally nailed down a date!

Friday, May 1, 2009

We are in at Shriner's

Jadon is in the system at Shriner's. We are just trying to work out the scheduling. Dr. Kozin usually only see's his Brachial Plexus patients on Wednesday's. We explained that we were hoping to travel on either side of a weekend. That is what would be easiest for us. Matt is waiting to hear back from the person who has the power to do that. She said we might be able to get Jadon seen between the doctor's surgeries on Fridays. So I just wanted everyone to know that we will be going to Phili just waiting to hear when.

St. Louis Trip

Hi Everyone! We have just returned from St. Louis. The news we received today was the news we had prepared ourselves for but that was still hard to hear. Jadon's damage is severe enough that he will not improve without surgery. Dr. Park wants to do surgery as soon as possible. We have to schedule and do an MRI at the Children's Hospital in Peoria. Then once they get the results down there from that they will schedule surgery. They won't really know how bad the damage is until the go in during surgery. Dr. Park made it clear that Jadon will never have full recovery of his arm. He will never have 100% use of his arm. The goal in surgery will be to get his hand and wrist functioning better and get the arm moving from the elbow down so he can do some normal life things like lift his hand to his mouth and pick up things. He said that most likely he will not be able to lift from the shoulder.

I will let everyone know when things get scheduled. We are still planning on going to Shriner's in Philadelphia for a second opinion. They have not returned my phone calls. I plan on calling them again tomorrow.