Wednesday, July 23, 2008

They want Drew to go back where?

We have got to stop going to the hospital to see Dr. Kirton!  Ok, maybe he's not the bad guy, but we are beginning to see a trend here.  Two outpatient visits (out of two) and Drew's back in the hospital each time!
Drew has had a busy week of appointments.  Monday he saw a chiropractor for an assessment and to see if we could get some input on good methods to use to get him using his left side again.  Our chiropractor consulted with another one on staff and they are getting in touch with some clinics in the States to see if they have any good suggestions so we should hear back next week.
Tuesday he saw the infant services team (therapists) and we got our homework for the week. He was less than thrilled to be at the hospital, and was unwilling to share one of those adorable smiles with his therapist for the entire hour (if anyone doubts his strong will that and the way he takes meds would make me beg to differ!).  We did get some good tips though and the speech therapist was very pleased with his vocalizations and mouth movements.  A+ Drew!
Wednesday we were off to see Dr. Kirton, his neurologist and primary specialist.  Drew has lost a little more weight and is down to 8.3 Kg (someone should tell him that baby fat is in!).  His seizures are also stronger - we called the hospital in the middle of the night as he was having a fairly strong, more generalized seizure that lasted over an hour and a half.  Trying to think coherently to make decisions in the middle of the night is always interesting, and we may have undone any work done to teach Drew the difference between night and day!  We were turning lights on to observe him, moving him around, talking, and pretty much everything they tell you not to do if you are trying to teach a young one the difference between night and day.  He was loving it!  Anyway, with input from the dr. we decided to wait it out and come in this morning.  Dr Kirton was not surprised that Drew decided to change things up again, but he is now thinking that one of the two antiseizure meds he's on is probably not working, and it may even be causing some of the strange symptoms Drew is having.  He is also pretty sure the steroid he was on in the hopes that Drew might have an auto-immune disorder called Hashimoto's Encephalopathy is not working, and therefore that this isn't our answer.  We are going to wean off of both of these drugs in the next week (Drew will love this - the fewer the better!).
We are back to the hospital later this afternoon for the following reasons:
1) Dr. wants to observe the seizure activity again.
2) Dr. wants to boost his intake to prepare Drew for his surgery and anesthesia on Friday (if he has a mitochondrial disease we don't want to compromise his energy reserves).
3) It will be easier to get in for another EEG and a hearing test while in hospital.
4) Drew's blood is in such high demand that they want to keep him around so they can get some more.
5) They think it would be better to keep a closer eye on him following the surgery, as minor as it is. (On that note, they have decided they don't need to do the lumbar puncture right now but will wait another month or so for that to make sure the effects of the IVIG have worn off.  He will just be having a liver biopsy.)
6) The nurses miss Drew.
So... off we go again.  We are going to enjoy the day at home before they reel us back in again as much as possible!

Prayer updates:
Please pray for his left side to show some improvement in strength. 
Please pray that Peyton will take this news ok. 
Thank you for all your prayers!


B said...

thank you for sharing your blog. i will be sending it out to the congregation shortly...i know that they'll want to keep up on the updates. always praying for your family....

Rippenhagens said...

Hi Jordan and Kari,
Thanks for sharing your blog with all of us. We are continually praying for Drew to get stronger and for the doctors to find something that will help. You both are amazing parents. May God bless all of you.
Myles, Dana, Brenam and Abbey Rippenhagen

Mel, Scott & Cadence said...

We think and pray for you constantly. Let us know if you need anything. Thanks for the blog postings.

Nicole said...

You make me cry and smile at the same time! I hurt for you, my sister, but I am so amazed at you and Jordan. I will of course keep praying, and sending out updates to more people for their prayers as well.

Love you, Sister

rick and michelle fehr said...

you are an admirable woman. still got your sense of humor - i love it! that is a great picture of you and the boys. still praying. michelle

Gerri said...

As a parent we can only watch and pray for our children. You both are being so brave in watching your children go through this and Jack and I pray for all of you. We know that God has a plan and that you have to just continue on the path that he sets out. Keep being brave, having endurance & patience and sharing your love for one another. Thank you for sharing your blog with everyone.

Aisling said...

We love you guys and we are sending all our love, prayers & strength to you.

erinlo said...

Hi Kari! I hate hearing that Drew has to go back in today, but am once again awed by your integrity and humor as you push on through.

Peyton is having a great day today and we are loving having him. He and Selah fight like a brother and sister and it makes me laugh. But, they also have sweet moments that make my heart melt! We have been to the park, had rest time, and played in boxes outside.

We love you guys and are honored to be your friends!

Dwayne, Mindy, and Peyton Seeber said...

Jordan and Kari,
You guys and little Drew have been in our prayers for a while. Thank you for the blog postings to keep all of us updated.

You will all continue to be in our prayers!!!!

abbie said...

I sure admire your attitude, Kari! Also know that if you ever have a bad day you don't have to worry that it would bum out your blog readers. I'm sure positive blogging helps, though. :) I work the same way!

Kevin and Laura said...

Landon is praying for Drew everytime he says a prayer. We are sorry that you have to go back to the hospital and hope to come and visit soon.

Jen Mooney said...

We think of you often and are glad for the blog to update us on what we can be praying for. We wish you the very best with this next stint of tests and time in the hospital. Wish there was something else we could do....

Steve said...

Great idea to keep all updated. The boys asked if Drew needed another band-aid?!

Know you guys have lots of help, but please call us if you need a break or anything!!

See you on the ice Jordan?? Hug to Kari and hi-five to Peyton as well!


The Aasen Family said...

Sharing your blog is a wonderful way to keep us updated on Drew. Reading your postings makes me smile (your amazing sense of humour) and also brings tears to my eyes thinking of what you are all dealing with. Our love, thoughts and prayers are with each of you as you face each new day. We pray for good news from the latest tests that Drew will be undergoing.
Love Steve, Linda, Dayna, Lisa and Trevor

schullerfamily said...

Jordan & Kari,
I spent the morning reading your blog and getting caught up on everything going on in your lives. You dad sent me your blog link today and I'm so thankful to know so I can be another prayer warrior for you guys. Kari, my heart is with you, as a mother, and I will be thinking and praying for you and your family.

Gayle Schuller

coghlins said...

Thank you for "going public" and sharing your life with us. It is a great way for us to be able to support you on your timetable. We love your family and pray God's hands hold and comfort through all you are going through.

Brenda & John

John and Angie said...

Hey guys. Thanks so much for starting this. It takes a quiet courage. We'll be back in Calgary this week and look forward to seeing you all.

John and Ang

dorinda said...

Dear Kari and Jordan,
Thanks for sharing your blog with us and giving us a way to keep closer in touch with you. We continue to keep all of you in our prayers. We love you and care so deeply.
Dorinda and Mike

Lezlie said...

Jordan & Kari:

Thank you so much for sharing this with everyone. You guys have been and will continue to be in our prayers.

The Pakosz Crew said...

What an inspiration you are to us all. Can't even imaging the frustration and pain, you are amazing. Please know how much we love you, and are praying for you.
As are many brothers and sisters in Christ here on the island.