Results of injection part 1

Wanna see something pretty amazing??

Im sure you will love it. Because it's Michelle sitting on her "bum bum" as we call it! And it's her standing without scissoring!!

What a way to bring in the new year!!

Don't mind my pajamas or her lack of pants. We were having issues lol!

Umm hello independent sitting!!!! In less than 72 hours!! YES!!!!!

So proud of herself!

Kristen I thought you and Mike would enjoy this...

TOUCHDOWN!!

I love how when she stands now she is no longer pitched and there is NO scissoring.

Happy 2010 everyone!

:)

Injection surgery #1

Surgery was a HIT!!!!!!! Let me just tell you that Michelle has opened up already and is able to walk (assisted) without scissoring!!!

She did fantastic. Regardless of the fact that we were up before the sun was. It took 30 minutes and the doctor was even able to inject Botox into her arm to help her tone their too!

Here's some information from my perspective. *Remember I am not a doctor. You make take or leave my advice but please do not go telling anyone I told you to go do this. It may not be for you or your child*

Fenol (sp?). Is injected into the nerves in her legs (next time they will use it in her arm too). With a nerve stimulator they seek out the newve and inject into it. This reaction is immediate. 

*We have already seen the results of the Fenol and are completely impressed. As weak as Michelle is at this point she still has so much strength that we have never seen before.*

The botox. This takes a little while longer to take effect so I don't know how it's going to work with her. If it works anything like they suggest it will than im sure we will be just as impressed.

Here's how this is supposed to work...

With the combination of these two toxins (yes they are toxins) patients like Michelle are able to strengthen the muscle (she is high tone cp) instead of using her tone. The fenol helps so that she stops scissoring when she walks or stands (legs crossing of one another involuntarily).  When she uses her tone instead of her muscle she doesn't bulid as much muscle as fast as she should. She has it just not alot of it. This now allows her to relax and get going on becoming a body builder as we joke.

Is their pain or discomfort?? Their seems to be more discomfort. However Michelle has a VERY HIGH pain tolerance. Use your better judgement if you stub your toe and you need tylenol. Im serious I have seen full grown adults stub their toe on a toy and need something for it (call me crazy but I step on matchbox cars at least 20 times a day and it doesnt hurt). Their is risk of hitting a sensory branch from the nerve that can cause EXTREME pain. They say that as soon as the patient is awake they will know if they have hit it or not. There is no way to avoid this. They cannot see the branches.

Why did we opt for this?

Michelle WANTS more than anything to walk. Her therapist, myself, our whole family, and almost everyone we meet believes that she will walk. I prayed multiple times and got the same answer everytime. This was what was right for her. It's what can help her. We are already seeing an improvement.

What comes after??

A rigorous schedule of therapy and stretching. Re-teaching her to crawl because she hops everywhere. Getting her to sit differently and ultimately her learning to walk.

Does this need to be repeated??

Ask your doctor if ou were to seek this treatment out for yourself or your child.

Up at 5 AM for our hour long drive to RCHSD.

Michelle and daddy in front of RCHSD.

Some of the Christmas lights at RCHSD.

Me and my amazing little girl!!

*Notice the hair cut??*

*RCHSD, Rady Children's Hospital San Diego.*

Happy Birthday to you...

My sweet, beautiful, loving baby girl.

December 29, 2008

December 29, 2009

Birthday party to follow

:)

The ultimate Christmas present....

This year when I was asked what I wanted for Christmas I very merrily answered "I already have what I want."

My husband home for Christmas, my family together. That is the ultimate Christmas present.

Merry Chirstmas :)

Tomorrow..

Is not only my second favorite day of the year (it leads to my favorite day :) ) but it is Abigail's DSMA scan for her kindeys.

I am praying so super hard tonight and tomorrow that everything is ok and that there is no damage and that we may skip surgery all together.

Sinus infection...

Horrible, rotten, mean...

Grateful....

Yes that's right. I am grateful for a sinus infection. And not a shunt malfunction...

:)

Days...

A mothers instinct...

Is always right... Right?

Michelle has been my sick little duckling this past weekend. Fever, cough, runny nose... But last night she awoke screaming her head hurt.. Now we have witnessed a few scenarios where she looked as though she was gagging (with her fundo she does not vomit), It concerned me enough to contact her pediatrician to see about a cough medicine to maybe help with the coughing and stop the gagging.

But now the headache. Thats where my Hydrocephalus mommy instincts come in.. This past summer was unbelievable. If you missed it all well be glad you did. I would have been much better off if it had never happened and Michelle would have been too. Quick recap; 2 surgeries in May 24 hours apart (both shunt related), June 2 surgeries 8 days apart due to a severe infection that they almost missed, and in August she had another surgery that was shunt related. In case you missed that it was 5 shunt surgeries.

So thats where my momma bear instincts come back into play. Do I dare contact Neurosurgery and give them heads up again? Do I sit back and wait and see what is going to happen? Last time I did that we spent a night in ICU. I want to believe it is her cold causing all the problems. I really do. It's just that something (a little someone i guess you could say) is telling me to watch her insanely close.

Baby wipes...

I started with this prett turtle and hearts pattern. It's flannel and really durable for multiple uses/washes.

I cut it into 10X10 squares and with a sewing machine sewed the edges.

I also gave it a little extra around the edges to minimize bunching.

Here's my other set of material. They truned out wonderfully and are working great!

"Young lady"... "Wait"....

Two cutsey things today. Things that had me stoping where I was to smile and laugh and hug and kiss the babies because they are so cute....


Storey number 1....

Shortly after we came home from Babies in bloom (local store to buy cloth diapers) Shawn Jr. exclaimed that he wanted strawberries for a snack. I nicely informed him that he was going to have to be patient as I still needed to get the girls from the van.. "Ok" he said grumply...

After about 5 minutes he repeated this process and I again told him just a second buddy I am almost done here and then I will wash your strawberries... He walked out of the kitchen and then came back in (I was finishing taking the diapers out of the packaging) went straight for the refrigerator and took the strawberries out.. I then said "Junior I thought I told you to wait? What don't you understand about that sentence?"... "Wait". Oh how I love him....

Story number 2...

As I got done changing the girl diapers I began looking for the Desitin knowing that I had brought it out to use on Abigail (rash is almost gone thank goodness). I couldn't find it summing it up to I forgot to bring it out but I kept thinking I used it so where did I put it??? I sat on the couch to check my facebook and there was Abigail crawling with it hanging out of her mouth.. I said "Young lady what are you doing?" She then took it out of her mouth crawled to me put it in my hand and laid her head on my lap as if saying "sorry mom."....



Love them <3

2 kids, 2 appointments, 2 completely different worries...

Yikes! My nerves are most likely as shot as shot can get right now!

Yesterday I took it upon myself to say ok I am done waiting for phone calls back from Urology and Spasticity... Im calling them.. I did and now im worried...

If you didn't catch Abigail's urology diagnoses she has vesicouretal reflux (kidney reflux) dirty urine splashes back to her kidneys creating infections. You can go here to read about Octobers visit with her doctor. We now have an appointment for her DSMA scan on Christmas eve of all days... I will let you know how that goes...

Now for Michelle... I guess I forgot to blog about her spasticity clinic appointment. Well on the 29th Michelle will be going under sedation to have Fenol (sp?) and Botox injections into her legs Those two drugs combined should have great effects to loosen her muscles so that she may learn to walk!

Ok I am off to go buy some pretty cloth diapers and some christmas presents for Shawn!!!!

Opinion....

Ok so you may have read where we are beginning to use cloth diapers.. If not click here and here.

So as im researching diapers I came accross a system which I have been able to try out on a friends baby and I love it. It's called FLIP.. Well there are a few I like, they are Econobum, Thirsties, Bummis, and Flip. All allowing prefold inserts. They all have inserts of their own but I like putting the PF in all but FLIP.

If you go here you can see what I mean about the FLIP system. It grows with the baby and my fave.. Snaps instead of velcro. Thats kinda what has sold me. That and im almost positive it will fit Michelle. Im going to start with Abigail and then go on to Michelle but I want to get "universal" for the both of them..

Have a sneak peek into my cloth wipes....

Want to see more??? Stay tuned :)

Our journey begins...

Into the wonderful world of cloth diapering...

I am going to share my experiences with different types of diapers and show you how I have made my own cloth wipes out of receiving blankets I have laying around the house. And of course Jill there is a very good possibility that I will be flooding your inbox with some insane questions.

Yay! Im super excited you have no idea. Shawn says if I talk about one more diaper system he is probably going to disconnect the internet...

Oh and im going to try to make a really pretty wreathe (sp?) thanks to Kristen. I am excited about that is well!

Any advice???

On cloth diapering...

I am a newbie....

Who knows absolutely nothing...

So if you have a website or a store that you think/know is nationwide send them my way!! I wann know...

Buying diapers for 2 and for school for Michelle is killing my pocketbook! So I am finding a way to cut costs and im even going to do cloth wipes. Wish me luck. I will post what I find works best for me and hopefully that will help anyone else who wants to know!!!

Thank you Typhoon....

Im not so sure about the rest of California currently but I am thankful for the Typhoon that blew all that rain and wind through yesterday...

(It flooded all the ranges on the base so my hubby didn't have to stay in the field all week!)

I am hoping that the newest storm that is supposed to blow through this weekend is filled with lots of rain.

(Then I will have an excuse to pull out my fluffy comfy blankets again!)

My favorite..

Rain...

And not the icky can't see your hand rain.. The drizzly kind that makes you want to snuggle up on the couch with a blanket and a cup of warm tea...

My kind of day...

What am I thinking?

A few weeks back I had a doctors appointment. Much to my surprise even though my waist had shrunk significantly since giving birth almost a year ago the numbers on the scale increased! Yikes!!! I had always said I refuse to diet as long as I am breastfeeding. Well that too has passed. Abigail seems to enjoy formula more than she did nursing. I think it just might fill her all too busy baby body of hers!

So as of now ( i know im crazy it's just before the holidays!) I am on a DIET.... BOOOOO!!!! I factored in my age, height and weight and with the help of my doctor come to the conclusion my weight with my family's past cardiac history is not safe. I am hoping that this works and I get back into those pretty pants hanging in my closet just begging to be worn!