Friday, June 27, 2008

Having a Ball

Charlie in a pool full of balls to encourage sensory imput of his surroundings and how his body can affect things.
I have been getting some requests to update again. Sorry it took so long. We have had two very busy weekends with each of our families. First a reunion/engagement party with the Christensens then a reuinion with the Barlows. I find it difficult to complete a task without an interruption but Rob is home today so I have locked myself in the computer room to complete this. .
SO here’s what has happened at our house lately.
Charlie is now set up with 7 different therapists (3 through IHC Rehab, 2 from Early Intervention and 2 from the School of the Deaf and Blind). He also has 6 different doctors to follow up with right now. I think this will decrease as he continues to improve but I’m glad to have access to their cumulative knowledge in the early stages as to not miss anything. I want to get as many therapists as possible involved to give him the best shot at improvement. However, that leads to a busy life for him and me. A typical schedule is as follows

Typical Schedule for COOP
8:00-Meds, bath, dressed
8:30- Exercises with Aunt Dierdre
9:30- Stander/nap
10:30- get ready and drive to therapy
11:00- therapy
12:30- get back home and settled
1:00- Eating exercises-taste a little pudding
2:00- medicine, nap
3:00- Exercises with Aunt Dierdre
3:30- nap
4:30- therapy in house
5:30-eating exercises-chew on things
6:30-8- agitated, likes to be held until falls asleep
8:00- meds, put on ankle braces, good night Sweet Boy
in between we are supposed to stimulate his brain by exposing him to different textures, sounds, finger play games, temperatures, patterns, lights etc.
Then add in Britt's summer recreation (soccer and tumbling) and craft day and swim lessons. I truly feel like a taxi service but love being a part of it.
We went to see Coop’s pediatrician last week and he said things are going well. He is right on schedule for his weight, height and head circumference. A growth spurt in his head measurement could mean that the shunt is not working so it’s important to keep monitoring that. Dr. Lam was very current on Charlie’s situation and gave us some good advice for handicapped kids. Since Coop was in the hospital during his 9 month and 12 month check up times he didn’t get any vaccinations so he is a little behind. Dr. Lam didn’t feel like he wanted to overwhelm his system so he only gave him 2 and we are supposed to follow up with him in 2 months for more. When Sherry the nurse gave him his shots he let out a real boy cry instead of his normal moaning cry. I thought it was pretty cute.
Lisa from IHC Rehab was able to score us this stander for Char to use. It is awesome! She fit it to him during therapy. I am supposed to work him up to 45-minute sessions 3 times a day but it’s a little hard to find that much time. So far I have been able to do it at least once a day for an hour. Surprisingly he doesn’t seem to mind it and even falls asleep. It also puts him at a great position to work on eating and visual stimulation exercises. I’m really excited about it.

I tried to increase his feeding rate from 55cc/hr to 60cc/hr and he threw up so we went back to 55. Then he continued to throw up throughout the day so I’m not sure if it was the increase or just some stomach upset/reflux. Maybe in a few days I will try again.

Wednesday I took him back to Primary Children’s for two more appointments. First was the Dr. Dries, the ophthalmologist. He spun black and white drum like this oneand Coop’s eyes fluctuated up and down (nystagmsus) so he said, “Yes Charlie can see!” We had suspected that but it was nice to have it verified by a doctor. However, there is some mild damage to the optic nerve (the wiring between the eye and the brain) and presumably brain atrophy in the vision area. In meningitis it is common to see improvement in vision for several years after the injury, but Dr. Dries feels that Coop will have severe vision loss the rest of his life.
From that appointment we went to follow up with Dr. Warren, the ENT surgeon. He checked out Charlie’s implant scar and the magnet site. He said everything looked good and we only need to come back if there is a problem. Then we met my dad at Liberty Park with Britt and Max before we had to head home for Charlie's food and meds. After swim lessons Ry joined us for a Boys Only (except for MOM) Slumber Party4 boys in a bed and the little one said "roll over I'm tired"RyRy thinks Char's lips need some tasty lip smackers
Things that have improved since we have been home:
Fewer medicines
Doesn’t need as much patting-mostly just in the evenings
Tolerates position changes and movement better-
His hands/fingers are more relaxed-not clenched constantly
Moving his head side to side on his own
Moving his arms at the shoulder on his own instead of only at the elbow
Eyes seem to be more active-still not focusing on anything and still dilated
Swallowing small amounts of pudding/food everyday
Only needs stomach venting occasionally
Tolerating his feedings through his g-tube better

Of course I would like to see quicker progress but I am learning patience.

Britts favorite way to watch TV and relax after soccer-holding Coop's hand

A highlight of our week was finally meeting Megan and Alyvia. I know it's hard to believe but Alyvia is even cuter in person (and her mom too). She knew just how to pat Charlie, Britt loved showing off for her and she has the cutest giggle ever. Rob would have given her anything when she smiled. Thanks so much for taking the time to visit-you will never know how much it means to us.

27 comments:

erin said...

Thanks so much for the post Angel. I am amazed at how much great information you gave us in such a short amount of time. You continue to amaze me as you keep Britty busy and happy. Way to go Charlie!!

Anonymous said...

You are INCREDIBLE!!!!! I love your devotion to your family and your patience with time. I check every day to read comments and see how Charlie is doing. He is so handsome. I love seeing pictures of Brit and his friends. Your boys are SO lucky to have Angel for their mom. I do not know how you keep up with everything. I pray for you to have continued strength and patience. I pray for Charlie to continue taking Charlie steps. I pray for Britt to continue to be happy and helpful. I pray for Rob to be safe and to be home often. You are blessed to have wonderful extended family on both sides that support you and will do anything for you. thank you for sharing so much with all of us! We love you!

Through the Looking Glass said...

Man; and I thought my days were busy! What a remarkable job you're doing keeping things moving along. You're a woman after my own heart - I'm all about the schedule and the organization of the day. Charlie can see! Yippee! And he definitely has his opinions, because I'm convinced it wasn't reflexive that he kept batting my face away as I kissed him over and over.

Can't wait to see you in a week!

Amanda

Anonymous said...

Thanks for the wonderful update! (I added you to my bloglines watcher so I didnt have to refresh often....)

Every thing sounds like it is moving along really nicely! Especially the vision part. What great news!

The picture of Char and Brit on the couch is the sweetest thing ever. What a good big brother!

Anonymous said...

Wow I can say that I am glad you added an update. I too among many other fans check for updates daily. I am so..... glad that he can see. I am so tickled about that. Angel you are an angel of a Mother to do this day after day with great spirits. We continue to hope for milestones with Charlie. We love you and your family and have never met you. Keep up the great work little man. You are making us all proud.

Love,

A family in Bountiful

summergibbs said...

SOOOOOOOO AWESOME!!! The other day I checked Charlie's blog and there wasn't a new post to read so I went back to the beginning. Wow! This amazing little boy has made a ton of progress since he was diagnosed....what a strong spirit! I know that he will continue to improve and he will amaze you on a daily basis. You are both awesome parents and Charlie is so lucky to have a big brother as caring and wonderful as Britt. Keep up the good work...we continue to pray for your sweet little family!

Anonymous said...

Just think if you continue to receive nuggets of good news every week or two (Charlie seeing) it will be like Christmas all year long!

TravandNat said...

We love you guys, are amazed by you all, and so happy to know that things are improving!

The Wilson 3 said...

That was a great update!
Keep it up.

Anonymous said...

Hi Charlie, i am really glad mom posted an update.I hope your friend Livvie Bug had fun at your house!! Mom gave us some great news. you look like you are busy! Shyla

Kelli and Jeremy Whitney said...

Good job Charlie what a stud! Ang, if Charlie needs another dance lesson I'm always ready for another session. Thanks for the cute pictures I just love them so much! I'm glad Charlie is improving. Seem's like it's a pretty crazy schedule you have going on please let me know when I can come help out.

The Woolstenhulme Family said...

AWESOME!!! I say this everytime but you are such an amazing family. I am so excited that Char can see! Love ya tons, The Woolstenhulmes

Shannon&Eli said...

that is sooo great that he can see!!! and angel you are amazing!!!

whitney said...

Ange, do you know how much I adore you? You amaze me. Coop is so lucky to have you and your crazy organizational ocd. I'm glad that so much has been accomplished. Britty is quite the athlete - he must take after you. Coop, keep it up, you can do it. I knew he could see, he is always winking at me, on purpose.

Roxey said...

Thanks for the post, and know how much I love you! Love and prayers always

stacyjean87 said...

First have to say you are so inspiring and amazing. I've been dying for an update...so thanks!! My son has MIC-Key and when he gets sick I have to turn his feeds down to 55...and then every few days move it up 2 at a time. It takes weeks to get it up, but faster just makes him throw up. The highest he can tolerate is 75. I also have to hold it for awhile after throwing up because he seems to be pretty sensitive for rest the night. (he just get night time feeds) I hope things get easier for you soon.

-Stacy Jean-

shelby said...

You are amazing! I love the picture of Charlie and Britt on the couch. I am sure Britts world has turned upside down too, and to see him just loving his brother was so sweet! It brought tears to my eyes. You continue to be a constant thought and prayer in our home. Even my 5 yr old, remembers you guys. Charlie has come so far, keep up the incredible work!

Anonymous said...

What progress. I was very touched by the picture of Britt and Charlie lying on the couch and Britt holding his hand. What an adoring and caring big brother. Thank you for sharing your journey with us. It opens our eyes to see such wonderful examples of families, mothers and the strong spirits of little children. Charlie is amazing. We all continue to pray for those wonderful milestones for your beautiful family.

Jamie said...

What a crazy schedule! But through all your craziness you guys seem to have such positive attitudes. Your family is a wonderful example. My little girl is so proud of her "CC steps" bracelet she wears it so proudly and everywhere!
We know you are so blessed and it shows through Charlie's progress, keep it up 'Lil dude:)

Andrea said...

It was so great to hear from you, Angel. It sounds like you are such a busy mama. Jon and Kate plus 8 have nothing on you. I'm glad that things are continuing to improve. You are a great inspiration. Love you guys!

Anonymous said...

Thanks for the update. Glad to hear things are well and slightly improving.
B

Anonymous said...

You are a blessed mother. I admire you so much, and just marvel at your strength and courage to grab each day by the horns. Charlie is SO beautiful...I hope you know how beautiful everyone thinks he is! Thank you for the updates, I still check every few days or so, as I have just fallen in love with this little guy. He is so precious, and my heart just melts when I see his little face or hear of his progress and improvements. You are STILL in my thoughts and prayers and will ALWAYS be! :) Thank you for your examples and for sharing your life with us! We love you!

Anonymous said...

love all the pictures! charlie and britt are so blessed to have a mom like you :) glad to see some more progress in the little guy and can't wait to hear about more charlie steps!

Paige & Josh said...

I love the pictures Ang. It was so fun to see you at our reunion and I can't wait to come see you again. I think my highlight was getting to hold Charlie so much. I was probably kind of selfish but I wanted to hold him every chance AI got. Josh's highlight was definitely guitar hero.
Paige

kimsuecamp said...

Wow, I am so amazed by all of you. You guys are great parents and are just exactly what Charlie needs sto continue to excell. His big brother looks like he is the best and he is getting big too. I love to see how loved these little boys are. I remember when my daughter was sick watching the rest of my kids chip in and help as little as they were and they never seemed to mind.

Keep up the good work. THANK you for keeping us posted. I wear Charlies bracelet here in Michigan so when people ask, I can ask them to pray for you all. Prayers from 1000 of miles away work just as well. Have a great day. Kim

Tawnia Allen said...

Angel, Charlie and family, this update made my heart happy, mainly for the fact that Charlie is improving, and also for seeing the blanket that I made for him in one of the pictures:) HOW SWEET!!!Coop looks so cute laying on it:) And what a wonderful big Brother he has!!!! And did I mention you parents are absolutely amazing! I will keep praying for you all, and hoping for nothing but great news! God Bless!!!! Tawnia:)

Tawnia Allen said...

Angel, Charlie and family, this update made my heart happy, mainly for the fact that Charlie is improving, and also for seeing the blanket that I made for him in one of the pictures:) HOW SWEET!!!Coop looks so cute laying on it:) And what a wonderful big Brother he has!!!! And did I mention you parents are absolutely amazing! I will keep praying for you all, and hoping for nothing but great news! God Bless!!!! Tawnia:)