Brecken's Story

8-19-09

Update on Brecken's visit to Children's today.

Brecken had Botox in his arms and hamstrings, he also had Phenol blocker injections into his inner thighs. The injections kill the nerves at the site of the injections. This prevents the brain from telling the muscles to contract. The nerves will reroute themselves over the next few months and then his muscles will start to tighten up again and then it's time for more injections. He also had dental work done. he had 4 crowns done and 3 cavities filled and the muscle under his tongue and the one above his front teeth were laser cut to help with the range of motion of his tongue and top lip. He also had his eye teeth shaved down as he has been biting the inside of his cheek.

They had given him 2 doses of Morphine and it still did not help with the pain, so they finally let us give him his lorazepam and he finally calmed down. He was crying so hard that his lips were turning blue. Once his lorazepam kicked in we were able to go home. We were all so wore out from the aftermath that we all took a nap and know Brecken is just happy as a clam!!!

I was really worried that he was going to be in painfor a few days, but he seems fine, but we'll just keep up with the Tylenol for a few days.

We had Brecken's birthday Party last Sunday and it was great! All the kids had a blast swimming in the pool! Thank you again to everyone for coming and the wonderful gifts. Brecken will thoroughly enjoy all his new movies!!!

Brecken had his appointment today with his physiatrist (muscle doctor) at Gillette. Brecken will have his next round of botox and phenol blockers on 8-19-09, and he will also be having his teeth capped and his eye teeth shaved down at the same time.

Brecken has been having severe problems going to the bathroom, so we will be going back to see his gastroentronologist. Hopefully there will be something he can give him to help!

Brecken weighs in at a whopping 23 ponds, ok so it not so whopping, but at least he is not loosing weight!! He is in the 2nd percentile for his weight and the 9th percentile for his height and to top it off....he is in the 14th percentile for his head circumference!!! This means that his brain is developing and growing.

Brecken will be starting his feeding and speech therapy at Gillette in 2 weeks and he will be going there once a week.

It's time to celebrate as our little CHOPPER is turning 2! We are having his birthday party on Sunday August 16, 2009 from 1-4pm at Grandma and Grandpa Dahlbergs. If you would like to come, we would love to have you. Please let us know if you plan on attending, and don't forget your swim suit and towel!

Mindy

Happy 4th of July!!!

Brecken is in his jumperoo and watching Deigo and just as HAPPY as a clam!! He has come so far in the last year! TV what a wonderfule thing!

Brecken has a dentist appointment 2 weeks ago, the reason for the visit is that he is biting the inside of his cheeck everytime he eats and it is very painful for him. The dentist will be capping all his molars and will be shaving down his eye teeth to hopefully prevent this. Another reason for the molars is that he is back to grinding and breaking his teeth...it is very hard and sad to listen to him doing this, as there is nothing we can do to stop it.

Brecken will also be having his 2nd round of Botox and Phenol Blocker injections. This will be done at the end of July or Early August. Dr. Taniguchi will do the injections, and then his dentist will come in and do his teeth.

ANYONE WANT TO BABYSIT BRECKEN THAT DAY???

Last Thursday during therapy, Brecken sat in place by himself for 25 seconds!! He usally falls right over when you let go of him.  Way to go Breck!! He is also helping knock down blocks with his arms and feet.

Happy 4th!!

Brecken and Grandma have 39 dives down and 1 to go on Monday!  Then we will be coming home!!!  Grandma has been such a trooper and there is no way we would have been able to do this for Brecken with out her!!! I am sure she can't wait to sleep in her own bed:)

Brecken has put on quite a bit of weight while he has been here.  If I had to guess, I would say that he weighs around 25 pounds.  The last time he was weighed was about 2 weeks before we left for Madison and he weighed 20lbs 6oz.

He has made some gains as I mentioned before, but we are hoping to see many more once we are home.  Most of the other parents have said that they see a big improvement in the month after they are home.  As I write this, he is babbling to the TV, he is watching Mickey Mouse.  To me, he seems so much more content, and is not needing as much holding time.  We would have to constantly hold him and carry him around the house.  So if anyone one knows of anyone wanting to get rid of a Jumper Roo (A frame style) I would love to know.  Grandma has one, but we need one for at home.

Brecken has been really working on the 4-point position this last week with Bras, his PT Therapist.  He has a lot more strength in his arms to help hold his head and arms up.  This is the crawling stance for those of you who may not know what the 4-point position is.  I was working with him yesterday on this and really am amazed at how well he is using his arms!!  Cross your fingers and say a prayer that he will continue to strengthen those arms and that he will be close to crawling by his 2nd birthday!!  This is my goal for him!!

Brecken had a good day today!  He was bouncing all around during his second dive today.  Grandma should have some pipes when she comes home...who says you need a gym???

Grandpa is in town for a couple of days with Grandma and Brecken.  He visited the Fire Station today and cooked dinner for them as a thank you for all their help!!  THANKS GUYS!!!

I will have lots of new pictures after we visit this coming weekend and I am sure I will have lots to share!

April 5, 2009

Brecken has had a ruff week with his ears. Grandma took him to the emergency room last night, thinking it was an ear infection. Thank goodness it wasn't. If it was, I am not sure that he would be able to continue his hyperbaric therapy. His ear was a little red which could be from crying, as the doctor said his 2 year molars are coming through. Diane will continue to have Dr. Van Dyke check his ears prior to his dives.

Physical therapy is going very well and here is a list of the things that Grandma is noticing:

-No longer grinding his teeth

- No longer biting the inside of his mouth

-Holding his head up better

-Taking better naps, they used to be around 20 minutes, know they are any where from an hour to an hour and a half

-Grabbing her fingers to be picked up when asked

I was suppose to leave today to go to Madison for a few days and woke up with a wonderful cold, so I am off limits to see Brecken. I will make sure we are all healthy when we see him this coming weekend at Wisconsin Dells!!  The boys are excited to see Brecken and of Course to go SWIMMING!!!

Brecken had a great day today!  Grandma went into the chamber with him this morning, and I went in with him this afternoon.   Granmda said he did good in the morning and he did ok for me, but he was getting very antsy.  Grandma had it easy because he didn't have his hood yet!  Well guess who got lucky!! Of course me!  That's ok though because she get's to enjoy the rest of the dives! 

Doesn't he look cute:) with his hood on! One of the tubes delivers the pure oxygen and the other removes the carbon dioxide. 

Dave, the tech who runs the chamber area said that Brecken should start taking better naps in the up coming days.  A lot of kids will even nap in the chamber, hopefully he will follow suit:)

Before his second dive of the day, we had Brecken's evaluation to see what he will tolerate for therapy and what we will work on while we are there.  Edna will be working with Brecken 1 hour a day to help strenghen his neck and trunk muscles. From there we will work on rolling and sitting.

 After Brecken's second dive, we went back to the suite to pack and get ready to leave for home.  I really had a hard time leaving him and cryed for quite some time.  I am sure Mike enjoyed the ride home!

After we left, Brecken took a pretty good nap to the tune that Grandma had to wake him up! 

He also cornered Grandma in the kitchen to steal her fudgecicle from her.  He made some nasty faces, but kept opening his mouth for more!  After the sugar high, Brecken decided that Grandma should stay up with him!  He finally decided to let her go to bed around 10:15; usually he is out cold around 8:00pm.

Well we made it to Madison in a little less than 6 hours yesterday!  We thought that was good timing with Brecken.  After the first hour and a half, I had to give him his lorazepam to help calm him for the rest of the ride, after that he was happy as a clam until the last half hour...

We are staying at the Candlewood Suites thanks to the Madison Fire Department.  Mike made some calls and connected with Mike Dibble and he found us this wonderful place to stay.  It is a 1-bedroom suite and has a heated indoor pool, warm enough for Brecken to go in!  Which we took advantage of this evening. 

The Fire Department stopped by this morning to a deliver a crib for us.  They were a very nice group of guys! THANKS!!

We met with Dr. Van Dyke this afternoon and everyone in the clinic was wonderful!  After our meeting, Grandma Diane went into the Chamber with Brecken for his first dive!!  It went rather well, he didn't care so much for Winnie the Pooh, so tomorrow we will make sure we bring Diego.  While they where in the chamber I met Elijah's mom Lisa.  If you have not heard us talk about this amazing little boy, his article in the newspaper was what really got us moving on Hyperbaric Therapy for Brecken. When Grandma and Brecken came out, Brecken was down to his onsie and grandma would have liked to have been!!  She said it was very warm in there.  The first 15 minutes is like your going up in an airplane and then it levels off for the 60 minutes and the last 15 minutes is like your coming down in an airplane.  During the 15 minutes both ways, your ears will pop.  Brecken did not seem to have a problem adjusting to this...THANKFULLY!!!

We also met some other wonderful families who are participation in Hyperbarics and one family is actually stay at the same hotel that we are.

I will post some pictures along with this same story on Brecken?s caringbridge site at www.caringbridge.org sign on is breckendahlberg.