Thankful Tuesday

I am so thankful to have such wonderful friends. To Elly, Jahna, Stacey, Debi, Lisa, Athena, Darci, Tracy, Deanna, Jessica, Lindy, and anyone else that I can't remember right now; Thank you so much for the Brown Palace package. What a thoughtful, extravagant gift. Yes, I cried when I opened it. We are so touched by your generosity and friendship. We love u all.



I am so Thankful today for the wonderful nurse who put Keegan's IV in on the first try. He didn't even cry. Such a relief to me today, as this is not been an easy task in the past.



I am so thankful to hear good news about Keegan's friend Selen. She also has TM and is doing well, crawling, standing and beginning to take steps while holding onto furniture.



I am also thankful, and grateful for christs birth. Merry Christmas everyone!

Not on CNN

I watched CNN for 2 1/2 hours yesterday and did not see Keegan or the Ronald McDonald story, nor did I find it on the CCN website.
Sorry I don't know what happened. I am planning to call the Ronald McDonald House today for an update. If someone did happen to see the story please let me know. Thanks

REVISED Update: Keegan to be on CNN this Sunday, 12/21 @ 2:00 mt, 4 eastern!

I got a call yesterday from Marianne, the director of the Ronald McDonald House. She got an email from the CNN team, and the story is airing this Sunday, 12/21 at 2:00 and will run on a loop all day. She quoted the email saying "Keegan has stolen the hearts of everyone at CNN"
Tune in to see my little movie star.

KKI

Keegan getting ready for the trip to KKI 2 weeks ago.

We have just returned home from 2 weeks in Baltimore at the Kennedy Kreager Institute.
Keegan had PT/OT every morning from 8:15 - 11:15. This was a lot for him to get used to at first. But he was a trooper. He really clicked with our therapists, Judith, Nicole, and Kristen; and so did we. They worked Keegan out everyday teaching Drew and I as they went. We learned how to use our e-stim machine (Electrical stimulation) on Keegan's legs, back, abs, and butt. We will be using the e-stim machine daily on Keegan now that we are home. While we use the stim we try to get Keegan to also use the focus muscle group in an activity such as standing, kneeling, reaching, or on all fours in a crawl position. This is only as easy as your ability to keep him interested in toys. It's a good thing its almost Christmas. Keegan was a very good student and was eager to please his therapists, most of the time.

Also while at KKI Keegan exercised daily on a treadmill. With a lot of help. They helped Keegan simulate walking with the help of a harness called a Light-gait. We are hoping to get this set up at home in Jan. It takes 2 - 3 people to hold Keegan's hips and to move each leg on the treadmill. He loves to watch his wiggles and listen to music during his workout.

PLAYTIME AT RONALD MCDONALD HOUSE

What's next for Keegan?

Lots and lots of therapy. We will be doing his therapy ourselves, as well as having professional PT several times a week. Busy busy busy. We are planning to take Keegan back to KKI in April for 2 weeks and will hopefully continue to follow up with KKI every 4 mos or so in 2009. The PT/OT we received at KKI is very specialized for spinal cord rehab and is very different from the traditional PT approach. KKI believes in exercising the affected limbs to promote health and regeneration of function. Keegan is at the prime age and timeframe for developement and healing of his illness. We still pray each day that his leg function will grow stronger and stronger.

THANKS

Thank you to all our new friends at KKI. Judith, Nicole and Kristen, you guys are awesome, we love you guys! Thanks for all your hard work with Keegan during the last 2 weeks. We can't wait to come back and see you again in April. Thanks Dr Janet & Dr Miller for all your help with Keegan! Thanks Gates family for making our stay and time at KKI so enjoyable. We loved getting to know all of you. Thanks for sharing your story and solutions with us. Simon is a wonderful little guy and we are praying for him too.

Happy Holidays,

The Stipe's

Ronald McDonald House

We have been staying at the Ronald McDonald house in Batlimore MD for a little over a week now. What an amazing place. First of all, it's very nice. It was remodeled this year. It has 2 huge modern kitchens w/ fridge and counter space for each room. (there are 37 or something) What really has made it amazing to me are the people that we have met. Each night a different volunteer group from the community comes in to prepare a large dinner for all the families. What a blessing! Then a second group usually hosts a game/play night for the kids. I really had no idea. Keegan has been an instant hit. So far he entertained a high school girls La Cross team, and a group of Medical Students, and the story editor of CNN. YES, For real. CNN is airing a story on the house the Sunday before Christmas. Look for Keegan! CNN filmed Keegan playing for a long time. The director here thinks he will be a big part of the footage. The editor actually sent a pic of Keegan to his girlfriend bc he thought he was so cute.

We have met some truly extroidinary families during our stay. Even though every one has a unique story and circumstance I think the parents here share a rare bond. We joked about it the other night that here everyone already understands the medical jargon and most of the time have actually already heard of your rare condition. During our stay so far, we have met and come to care about so many families. Formerly conjoined twin girls from VA, Erin and Jade and their sister Taylor have a truly amazing story. Check out their blog on my favorite blog's under The Buckles. One of the girls suffered a spinal injury as a result of the twin's seperation surgery as babies. Now 4, she has been attending the Kennedy Kreager program for therapy for years. What an amazing family. We also met a young family from Trinidad (in the carribean, not in CO) who on Tuesday the Dad will be donating a third of his liver to his 11 month old daughter. Apparently his liver will generate a new organ for her. WOW. This is their first time in the U.S. And there are so many more that are just as touching......... We are praying for all of them. Please keep them and us in your prayers.

Thankful

I have long been admiring another's weekly blog about being Grateful for the blessings God has shown us. I know in my heart we are so blessed and I keep meaning to blog my blessings and share them with all of you.



I'm thankful to have such a wonderful husband. Drew works so hard to take care of us everyday.



Holding my sweet sleeping boy this week



That we are where we are with Keegan through the answered prayers of so many friends and strangers alike. It's so humbling.



For this wonderful warm weather....... It has helped me to get through this last week to be able to go for walks around the neighborhood and even take Keegan out Trick or Treating!

Halloween!!

Halloween 2008

Keegan was a Dragon but was not a fan of the hat or mittens. At least it was a warm night for his first year of trick or treating.

Keegan went Trick or Treating with his friends Kaitlyn and Breck. They figured out quick this candy business.

The night before Halloween

IVIG this week......

It went pretty well all things considered. Thank goodness for the Wiggles. The IV that we had to do a couple times was the worst part. I'm so glad it's over. I pray that it will help those legs.

.......Shh Naptime..

Keegan and Grandpa played on one of the fourwheelers after Keegan's treatment. Boys love the garage.

tagged again.......by jessica!
As a recipient of this award I must answer the following questions with ONE WORD answers and then pass it on to 7 more people to do the same.

1. Where is your cell phone? purse

2. Where is your significant other? couch

3. Your hair color? brown

4. Your mother? Loving

5. Your father? Smart

6. Your favorite thing? Keegan

7. Your dream last night? forgot

8. Your dream/goal? recovery

9. The room your in? family

10. Your hobby? scrapbooking

11. Your fear? spiders

12. Where do you want to be in 6 years? here

13. Where were you last night? home

14. What you're not? chef

15. One of your wish list items? tan

16. Where you grew up? colorado

17. The last thing you did? music

18. What you are wearing? sweats

19. Your TV? on
20. Your pet? kona
21. Your computer?laptop

22. Your mood? restless

23. Missing someone? grandparents

24. Your car? pathfinder

25. Something you're not wearing? shoes

26. Favorite store? all

27. Your summer? sad

28. Love someone? drew

29. Your favorite color? green

30. Last time you laughed? today

31. Last time you cried? dunno

Pumkin Patch

October 2008

Keegan went with Grandma and Mom to the Pumkin Patch! He was pretty serious and interested in all the kids and animals. He saw pigs, a goat, a donkey, and chickens.

Keegan rode in the Pumkin wagon and looked at the farm animals.

KENNEDY KREAGER SPINAL CLINIC

We also visited the Kennedy Kreager Spinal Rehab clinic during our Baltimore trip. They were excited to meet Keegan and think they can help him with FES (Functional Electronic Stimulation) Therapy. Which they tried during our appointment. See the pics! We are considering going back for their 2 week outpatient therapy program soon.

Johns Hopkins

We had our Dr's appointment last Wednesday, 10/8/08 with Dr Kerr. (He is the big man Neurologist @ Johns Hopkins in Baltimore) Johns Hopkins has the only Tranverse Myelitis center in the world and Dr. Kerr is the head of the program. We were so lucky to get an appoinment with him this soon. A definate Blessing from God. We anticipated an 8 -12 month wait to get in and were seen at the last minute due to a cancellation. Dr. Kerr was thrilled by Keegan's progress (we showed him a cell phone video of Keegan moving his legs in the crib a few days ago) and said that Keegan might the 1st or 2nd best case he has seen in a small child at this stage of recovery (3 mos). He thought Keegan would do great and continue to make great strides in his recovery including (hopefully) walking unassisted. You have no idea how great it was to hear him say this.

What next?
Dr. Kerr thought we should go ahead and get another full dose of the IVIG treatment (Keegan had that in the hospital back in July) and follow up with a half dose each month through next March. He thinks this treatment will help boost Keegan's immunity during the winter months, as he does not advise that Keegan get any vaccinations until at least age 2 if not longer. He also thinks that the IVIG treatment ( a plasma-type blood that is full of human antibodies ) will help with Keegan's spinal injury/inflamation. His biggest concern now is for us to keep Keegan healthy this winter. Keegan's immune system is weak and so are his diaphram musles which weaken his ability to cough, and without vaccines, he is more prone to contract serious illnesses like pneumonia, rsv, and the flu. His exact words were "Purell Purell Purell." He definately confirmed our need to keep Keegan out of the public as much as we can this winter.

Dr Kerr said he has never seen a reoccurence of TM. Whew......... What a relief.

THANK YOU DR. KERR & TEAM AT JOHNS HOPKINS! WE ARE SO GRATEFUL FOR SO MANY ANSWERED PRAYERS THIS WEEK!

Great Grandparents

Keegan met his Great Grandparents this week! Harry and Ruth live in Sharon, PA and came to visit us in Baltimore, MD. Grandpa Harry is 88 yrs young and loves to talk about cars and world war II. Keegan had fun playing and seeing the Inner Harbor with them. Keegan loved feeding Grandma and Grandpa rice chex and popcorn. I don't know who had more fun.




Keegan with Great Grandma and Great Grandpa
October 10th, 2008






Keegan and Great Grandpa at the Inner Harbor
Balitmore MD
10/10/08

Week one down, one to go.......

This has been a tough week for me and for Keegan. Mr Keegan is teething, and has a bad cold. Mr Fussy is more like it. He's not his usual smiley self. In addition, this week he had 2 follow up appointments at Children's Hospital and an appoitment with Dr. Melamed, the Immunologist here. We had good news, no news, and not so great news.

I guess I will start with the good.....
The Urology Dr. cleared Keegan, so we don't have to Catheterize him anymore. YEAH!! This news made the 2 hours Keegan and I waited to see the Dr . totally worth it. Keegan also saw the Rehab Dr's and some of his PT's. They were all so excited to see him and see how he is doing. The Doc's thought he looked good, like he had improved since they had seen him last (about 7 weeks prior.) Drew was able to get Keegan to kick his left leg so they could see, so that was awesome.

The Rest........
The visit to the Immunologist was good but left me again with the realization of how serious and aweful this all really is. Keegan's blood tests confirmed his severe allergies to peanuts, and also showed allergies to nuts, bananas, and wheat. Wheat was a new one. So now in addition to being off dairy, Keegan is now off wheat, and soy. Now I'm left navigating uncharted waters. The Dr. prescribed vitamins, and some allergy meds and a very limited diet. In addition, his results showed some anomolies in Keegan's immune system showing that Keegan has little or no immunity to some of the things that he's already been vaccinated against, and stranger still that his IVIG treatment should have boosted. We are not able to get Keegan vaccinated for many common and scary illnesses this year due to the IVIG treatment, so we are to keep Keegan out of the public as much as possible. No stores, malls, daycare centers etc. It's going to be a very long winter. I'm already getting cabin fever just thinking about it. The Dr. wants us to come back in a month to consider more IVIG. Keegan had this treatment in the first week of his illness, it is a immunglobin blood treatment that for some reason shows ability to help reverse peralisis. Since Keegan has developed some small movement in his legs, (mostly his left) in the last month or so, the Dr thinks a conservative approach is best.

Well, that's it. We leave for Johns Hopkins and Kennedy Kreager Institute on Tuesday. Keep us in your prayers. Thanks.

SOAP BOX.....
If anyone is considering having another baby......I would definately, no matter what the cost...bank your cord blood. Our Dr mentioned to us a recent case that made the news of a baby with paralsys from cerebral palsey who was healed by stem cells from his own cord blood. Makes me want to cry. If only I had done it. At the time the $2500 fee and monthly/annual payments seemed like a lot, and I didn't know anyone else that had done it. Trust me.... It's priceless. I would pay a million dollars to have it now.

About a boy

At 10 and 1/2 months Keegan was diagnosed with a rare spinal disease called Transverse Myelitis (TM). Our life has been about little else since. After 5 weeks at Children's Hospital Keegan was release just 2 days before his first birthday. The best birthday present ever.



On the road to recovery................Literally. Baltimore or Bust.

The next 2 weeks will be big weeks for Keegan. This week 9/29, he will have follow up appointments at Children's Hospital, and at the Immunologist/Allergist in Denver. Then next week we will be flying to Batlimore's Johns Hopkins and Kennedy Kreager Hospitals for appointments with Dr. Kerr, head nuerologist specilizing in TM, and with the cutting edge rehab facility that treated Christpher Reave. We feel really fortunate to have gotten a last minute appointment in Baltimore due to a cancellation. Even though we hope and dream that these Dr's can help continue Keegan's recovery now and in the future, it is not with out some trepidation on my part. I worry about what they will say, what treatments they may recommend and how my little boy will handle them. We will need lots of dum dum suckers and prayers.


Background

Keegan's illness left him initially without movement in his arms and legs. Through tears, pain, and countless prayers he has almost regained full movement in his arms and hands and now even has some movement in the legs as well.



Just this week..... Keegan pulled himself into a stand (using mostly his upper body) but was able to support his weight on his legs for a few seconds. He seems much more aware of his legs and feet. He looks at his legs while trying to move them and although sometimes he uses his hands to pull his legs as he is moving them. He invented a new game, putting his foot through his teething ring. He continues to try to lift his foot to play the Kick-daddie-in-the-face-game, which he loves of course.
We are so blessed this week to see Keegan's hands improve, staying open more and more, and we are so elated to see him stand and move his legs. We thank God for many answered prayers this week, and also all of you for praying them.

Getting Started!

Ok........we are bloggers now. Or at least we are trying to be. Be patient. More to come.