Tuesday, June 30, 2009

Tube Drama!

Two more days until the first of 2 big departures! The boys are so EXCITED to go to Disney! As usual I have not come anywhere close to being ready to go! This happens every time! Every time I manage to pull it together and board the plane on time with everything we need!!! As long as I have all of Makenzie's medical stuff I try not to stress about the rest! I would drive myself insane! There are stores in FL and that is that!

Kaleb got his cast changed again on Monday and his arm is looking good! He had a waterproof cast put on just in time for our big adventure! It looks great! He asked when we left if we could go to the pool!!! Hmmmmm think he likes the pool?!

I had made an appointment for Monday to get Makenzie's GJ tube changed out as well so that we didn't have to go back again. Her tube needs to be changed every 3 months or so and it was that time! I didn't want to take any chances of it breaking in FL but for sure not Costa Rica!! However, I got a call on Moday morning from the IR department saying that they had to use the last of her size tube in another child last week and the next shipment would be there on Tues (today) So much for my plans of convenience but what can you do?!

So today we headed off to Childrens after IR called to let us know the button was in. We got there and they went to release the water from thew balloon to take it out and the valve was broken!!!!! They tried everything they could think of including cutting the valve off to get that water out! No can do!!!! All the while Makenzie is screaming, frothing, kicking, tears everywhere, holing her breath, vomiting, and her face is splotchy she is so upset!

So we left the hospital with half of a button....lol.... and plane tickets to FL in 2days!!! AHHHHHHH So the new plan is......to bring her BACK tomorrow... yes for the 3rd day in a row.... remove and replace the button under general anesthesia!!!!! I am NOT happy!!!! I know he is right but I am still NOT happy!!!

I called her Rehab doctor to tell her what was going on! I needed to talk to some one that truly knows Makenzie! She is great! I know that the IR doctor know how to put in a mad button but he really doesn't know my daughter and it calmed a lot of my fears to hear her Rehab doctor tell me it was the best thing to do. She is also going to check into getting a MRI done tomorrow since we are going to put here under anyways. If it happens with less then 12 hours notice it is meant to be... if not then....

We also talked about the baclophen (muscle relaxer) that Makenzie is on at night and we mutually agreed that I would wean her off of it! YEAH!!! She is on such a low does that it should take less then a week to get her off of it completely!

On a much more positive note, Makenzie has learned how to throw a mean temper tantrum!!! She has decided that she doesn't want to go to bed at night! Crazy Girl! This makes me smile! Normal 3 year old stuff,,, yes for the first time in over 2 year I got to use the word normal! It is soooooo cute to watch her lip pucker up to start the 30 min long tantrum we have had for 3 days straight now! The second you give in she stops crying!!! It is great, but hard at the same time! I don't want to create a bedtime monster but she is getting cause and effect finally! She is communicating with me! Telling me NO... with out the words of course! How can I not show her that I understand? She does eventualy give in and go to bed... like by 7 instead of 6 so it is not like she is getting my goat until midnight!!! I love her so much!!

Please pray for us tomorrow! To say I am nervous would be an understatement! I am trying my hardest to put this in God's hands! He will protect her! Please pray!

Friday, June 26, 2009

Random Thoughts


So much is going on in our life right now and so many un knowns!!!

Several things have got me thinking about life. All of the joys and triumphs and the frustrations and failures!

First one of my dear friends who I met in Arizona while doing HBOT sits as we speak in a PICU room with her beautiful son Santana who will not stop seizing! He also suffered a brain injury about the time Makenzie did! She is with Santana in the very room she sat in over two years ago wondering if he would live or die and what either of those scenarios would mean. WHY! I love this family! Please pray for them! Santana's story can be found here

This has me thinking back to the beginning again! Good thoughts seem to come more freely these days as we have overcome so much! Do I still wish that I could erase that dreadful day in March....... Yep..... But I can't! I left the hospital with my baby girl after 5.5 weeks not able to do ANYTHING a child her age should do including the ability to eat! She moved NO parts of her body and I don't believe at that point she could see or hear. She had a blank stare in her eyes and would not make any kind of eye contact. Lights on, nobody home!!!! Not a joke! She CRIED ALL the time! She didn't sleep, and she puked her food and wasn't gaining weight! I know many of you have heard this many times but some have not. So thanks for bearing with me as this event with my friend has brought me back here again!

Fast forward just over 2 year later. Makenzie sees, hears, makes eye contact, can eat a bit through her mouth, laughs, smiles, loves games, talks by using a switch that she pushes with her hand.... yes that is right... she IS using her hands!!! There was a time that I didn't think her hands would ever do anything!!! She is walking by herself in a gait trainer and rolling over. Yeah God!!!

I often, however get frustrated with the things she can't do like sitting up! I watch some kids heal much faster and it makes me MAD!!! Yes, I even yell at God through my tears with the why isn't that my kid doing those things statement! Truth me told I am human and yes some days I am PISSED!

One night not long ago I cuddled up next to Makenzie. She was sound asleep and looked so perfect! I realized how much I have! Her smile and laugh makes it all worth while! Her perfect soul and love for life makes everything bad fade away most days! I prayed when I was pregnant with her that my daughter would grow up to be my best friend! This was not the way I would have chosen it to happen but......All of my kids are so perfect in every way and Makenzie is STILL that daughter that I always dreamed of!!!

As we get ready to go to Disney and Costa Rica and then The Napa Center my brain is overwhelmed with all there is to do! I can't wait to spend time with the boys at Disney! To see my kids walk into the Most Magical place on earth will be priceless!!! Then on to Costa Rica for Stem Cells! To top that off we will be meeting another GREAT friend there! We will also be able to spent tons of time with another GREAT friend in CA as both of our kiddos will be doing Suit therapy at the same time!!!

This has me thinking about all of the people we have meet in the last 2 years who are walking down similar roads of heart break and special needs!!! I feel so blessed! It is so great to have you ALL in my life!!! You add so much to it and really are the ones that keep me sane! Thank you Michelle,Jodie, Lindsey, Julie, Stacey, Beth, Mandie, Stacey, Susan, Kahne, Jennifer, Jenny, Jenni, Cardie, Jamie, Naomi, Trina, Linda, Becky, Chelle, Christine, and Meredith. If I forgot anyone I am so sorry! WOW!!! Also ll of you that have supported us threw this just because you love us and want to help our family!! We would not be here with out you ALL!!! Thank You!!!


So I guess the bottom line is LIFE IS GOOD! God is GOOD! I feel BLESSED! We have so much! There is still all of the unknowns and the hearth break and wonder but 2 years later it is better! MUCH better! As we embark into more unknowns with hope that God will use the Stem Cells to give Makenzie more mobility and language.... any kind of healing really! That our 3 week trip to The Napa Center this fall will have good results as well! We need God's healing hand upon Makenzie! I am content! I am happy! Does that mean I am giving up? NO WAY!!! Not until the day Jesus takes me home!!! Pray, Pray, Pray, Pray!!! Keep BELIEVING with me.... PRAYER WORKS!!!! Thanks For EVERYTHING!!!!

Tuesday, June 23, 2009

GREAT DAYS

Hey every one!!!

We have had some great days around her lately!!! Summer is going well!!! This has been something that I have stressed about for the last 3 months! The though of having 4 kids around... 3 of which are in the prime of sibling rivalry..... 1 that needs to continue with extreme structure.....caused me much anxiety! Now that it is here it seems to be going alright!!! Of course there is fighting, mess making and boredom but all in all is has been much better then I imagined!!!

We are now less then 2 weeks away from starting our summer adventures!!! Oh my!!! I am so excited!!! Disney is going to be great! Finally after 2 years we are going to go do something fun as a family!!! We have earned it!!!

This weekend was quite and Fathers day was good! Life never stops but we were able to sit down to a nice lunch together!

Makenzie has been working so hard!!! She is doing great in therapy both with her therapists and her mommy!!!

We have started getting her into her neuro suit more as she really needs the input!!! She has done AWESOME in her walker as well!!! On Saturday I made a few more adjustments to it and WOW! That little girl never stops amazing me!!!! I put her in it and went to strap her in and she took off! Ok in context... taking off to her means she tried to take steps before I even got her strapped in! She just loves to walk!

The sad thing is that there is only one short hallway in our home that she can walk in as she is not strong enough to push herself on the carpet!!! I put her at one end and she has been walking all the way to the door with out any one touching any part of her or the walker!!!!!!! Then I roll her backward and start again... over and over and over!!!! I have dreamed of this for 2 years now!!!! I am so proud!!! She just continues to be a miracle every day!!! So..... if there is anyone out there that is in the flooring business that would like to help a little girl have access to her home we would be forever grateful!!! It is so hard for me to know that she can walk and explore and not have the means to give it to her!!! God will provide!!! He always does!!! Please pray that somehow we will find a way to get new smooth floors so that Makenzie can do this!!!

On the topic of walkers.... We have been searching for the right one for Makenzie for the last year and a half! Today the best seating and mobility guy in the whole world came with the last choice and FINALLY our quest is OVER!!!! We are sticking with the Rifton Pacer!! She is doing so well in it and he also thought it was the best choice!!! SOOOOOO he is allowing us to use the one he gave us to borrow until Makenzie can't use it any more... grows out of it ..... or better yet learns how to walk with out any assistance!!!! This is huge!!! No waiting for insurance approval, co pays, denials,or months and months of red tape!!!!!!!! Thank you TD!!! This means more to us then you know!!!! Amazing!!!

Pray for us and safe travels! Pray for good weather and great times!! Pray for the donor stem cells to go where they need to go!!! I should be receiving an e-mail in the next couple of days with specific times for our appointments while in Costa Rica. I would like to arrange for a prayer vigil during these times each day!! We will be in Costa Rica from July 11th-July 18th with treatment on July 13th-17th. I will post the appointment times for each day when I get that information. If you would like to commit to praying for Makenzie on one of those days please either leave a comment here or e-mail me at makenziesmiracle@comcast.net. Thank you all for everything!!! Keep Praying!!! Believe..... Prayer Works!!!

Friday, June 19, 2009

A Bill of Rights for Parents of Children with Special Needs

Several weeks ago another mother posted on her blog a request for parents of children with special needs:

"Lisa got me thinking about a Bill of Rights we, as parents of kids with special needs, are entitled to. I'll start it—please add your "amendments" in comments, and I will put the whole thing together and re-post it. Then we can all print it out, stick it on the fridge and live by it! Or something like that."

This is what she compiled! I think it is great!!!! Both for parents of kiddos with special needs and for those who do not, for a bit of understanding! This is right on! This came from many parents and it is amazing how similar ALL of our thoughts where!!



We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder “What if…” every so often.

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people’s ignorance in whatever way we feel necessary.

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

* We have a right to go through the grieving process and realize we may never quite be "over it."

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio.

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

Compiled in honor of my little boy, Max, and all of our beautiful children on June 17, 2009.

Summer is Here!

It has been a good week! Busy as always but good!

The beginning of the week was nice with now severe weather in the early afternoon so I loaded up the kids and we made our way to the skate park! The boys had a ton of fun and Makenzie did great under the shade tree!!! It was so much fun to see the boys be boys and leave all in one piece with no more broken bones!! LOL



I know that activities like this may be asking for more injuries but as I have told many, I refuse to live in a bubble! No, I am not getting rid of the tramp and will not dis allow my boys to be boys!

Kaleb's arm is healing well! We went to the hospital Monday. They cut his cast off and that did not make him very happy! Then they took him to get x rays and when they tried to supenate his arm is was a river of tears! Poor kid! They checked his range of motion. This was a bit of as the muscles in his arm were damaged by the ulna and radius breaking right through them. He had a hard time straightening them out which means the muscles are very tight and a bit short! So the homework was to get him to use his hand more! Good luck to me! He wants nothing to do with that! His nerves were laying right on top of the break and there seems to be no damage in that area! Praise God!!

Makenzie has been doing very well in therapy this week! Her PT was back from a week of vacation and Makenzie was so happy to see her! She had speech today and Makenzie told her "see ya later alligator" when her PT told her bye! It was so cute!!




I am starting to get very excited about our upcoming events in July!!!

We leave July 3rd for Disney World! The boys couldn't be more excited!!! 3 years this was our Christmas present from my parents and for obvious reasons we have not been able to go until now! We are so excited! Thank You Mom and Dad!

Makenzie and I will return on the 8th to get ready for our trip to COSTA RICA!!! I am so excited!!! This has been a LONG time in the coming and it is finally almost here! Not only are we going to get SCT for our beautiful baby girl but will FINALLY meet a very close friend of mine!!!! I am not sure which I am more excited about! Both of our families have similar stories and our kids are about the same age! CAMP COSTA RICA here we come!!!

Lastly we will be traveling to California the middle of Sept for Neuro Suit therapy! I am sooo looking forward to this!!! She is so ready and the NAPA Center is an amazing place! We will also be seeing a couple very close friends there! We have met so many wonderful people in the last 2 years! Wow the next few months should be GREAT!!!

Please keep praying! Pray for safety in our travels and for the therapies to really help Makenzie!!! Pray that for the time we will be gone that the boys will be safe and happy!! Thank You for all of your support! We have a ton to get done in the next two weeks! Pray that we can get it all done and be ready for our upcoming adventures!!! Thanks! Believe... Prayer works!!!!

Friday, June 12, 2009

Long time.. no post! Sorry!

It has been a bit crazy around here as it is the first week of summer break for the boys!!! It has been a bit of a challenge as Kaleb is unable to do many things! We have managed to keep busy as always!

Makenzie had a light therapy week because her PT was on vacation! She was greatly missed! Makenzie continues to do very well!

On Friday... before our 23 hour stay at the hospital... I took Makenzie to go get her pictures taken. I put them up to the pictures that we had done a Christmas time and am AMAZED!!! The expression on her face and the twinkle in her eyes is so much brighter! Just to make sure I asked her therapist and some friends and family and they to were amazed!! I am so thankful!!!

Not much else has been going on here! We are getting so excited about our trip to Costa Rica! Please continue to pray for this trip!!!

Thank you all once again for all of your thoughts and prayers!! Keep praying! Believe... prayer works!!!

Monday, June 8, 2009

Wordless Monday.. or what ever day it is... I have lost track!

Sorry some of the pictures are sideways!! The disk was read only and wouldn't let me rotate them!!! Look at how far she has come!!! The twinkle in her eyes and the expression on her face says it all!!!!!












Sunday, June 7, 2009

Broken!!!!!


Well this has been a VERY long weekend!!!

Friday afternoon after school the kids had some friends over and where outside playing! I had just gotten done giving Makenzie a bath and she was in her pj's, her hair was done and formula was made. I was talking with my friend in the living room when I heard Kaleb screaming! As I reached the back door so did he! I took one look and screamed! Kaleb's right arm was bent in a place that it shouldn't be bent! My friend took the boys and I loaded Kenzie and Kaleb into the truck! It was the LONGEST ride to the hospital... ok well maybe close to the longest! I kept asking him what color his fingers where because I know if I looked I would be on the floor! Not a good place to be when your son needs you to be strong! I called my mom on the way and she met me down there. There was no way I could do this alone with Makenzie!

We got to Children's and of course there where tons of people in the waiting room and in line to be checked in! I bypassed the line and told the lady that my son had a VERY broken arm. She looked at him and told me that I had to get in line!!!!!!!!!!! I looked at her and asked if I should go to the parking lot and call 911 so i could get some help!!! She told me I could ask if the other parents minded if we went first!!! WHAT!!!!! So we got checked in and then where told to go back and wait!!!!! Finally they triaged him and took us right in to get a x ray! Then back to the waiting room as they didn't have an open room! With in about 10 min we were heading back to a room. The doctor walked in and told us that Kaleb had a broken arm. HMMMMMMMMMMMMM really!!!!

Then the orthopedic surgeon came in and told us what he would be doing. They put a iv in Kaleb and brought him to a different room and sedated him. I left only to be called back 10 min later to be told they couldn't fix it like that and he needed to go to the OR for it to be cleaned out as the bone had broken through the skin. So off we went to the OR.

It was funny as the doctor was explaining the procedure I was asking questions and making comments. She looked at me and asked if i had medical experience!!!! HMMM.. I looked at her and said "yes, just not the kind you think I have!" She told me that the questions and comments that I was making most parents have no clue about! Well I guess I have learned more then I thought!! It is funny when you use big medical words around doctors! They don't know what to say and then start talking to you in different, less dumb downed language! The surgeon told me he was going to give Kaleb a med to reduce his secretions... I looked at him and said.. "robinal"... he looked at me confused and said "yes actually that is it!" FUNNY!!

He was then fully knocked out and a rod was placed in his arm. When he woke up it was just pasted 12 am. They took us to a room for the night as they wanted to give him 24 hours of IV abx! My mom left and I laid out the window seat mats on the floor and snuggled up next to Makenzie and we all drifted to sleep! Until that is the noisey nurse came in!!! I know they had to! Still there is no rest EVER when at a hospital!!!

Needless to say we walked through the door to our little blue house around 4:40 pm yesterday! We were all exhausted! I gave Makenzie a bath and put her to bed at 5:30pm!!!



When I came downstairs Kaleb looked at me and asked if his friend could come over!!! You would never know if it wasn't for the big black cast on his arm that he had a broken, rod lined arm, placed in the OR less then 12 hours before!!! So that is what he got! He is such a BRAVE boy!!! I am sooooo proud of my Kaleb man!!!!




We laid low this morning! Kaleb slept until 11:30 am! Then it was back to almost normal with a house full of boys! Mine and the rest of my neighborhood!!!

Then the rain and hail came. Followed by the tornado warning! So now all the boys where in the basement! I am not sure how many but kinda looked like a clown car only in my basement!!

After the sun came back out I sent all that were not mine home and we headed to SAM's Club! We came home with no food 2 hours later! Turns out that the tornado warning wasn't just a warning! The mall (10 min) from my house had been hit!!! There was a car upside down, the fronts of several stores where gone, glass everywhere! It was crazy!!! I took picture but I have no clue how to get them off of my phone!! I guess I am not as tecky as I once thought!

I figured it out!!! Yippee!! I have redeemed myself!



So now ALL of the kids are sound asleep! Whew!!!! I am going to go catch up on all the house stuff that didn't get done and prepare for the last 2 days of school!!! Zach graduates from 5th grade tomorrow!!! My baby... ok not so much any more.... is going to Middle School!!! WOW!!!! Kaleb has made it very clear that he is going to school tomorrow!!! We will have to see!!! If that is to happen he will be needing a serious scrub down!!! I have never had a broken bone or dealt with any type of cast so I am still not sure how to do that without getting his arm wet but I will figure it out!!! I always do!!

Keep praying!!!! Pray for Kalebs arm to heal quickly!!!! Pray for the upcoming Stem Cell therapy. Well we just need healing around here!!! LOL Pray, Believe.... Prayer works!!!

Tuesday, June 2, 2009

Lots Happening!

Here is a quick video of Kenzie giggling!! She thought her brother opening and shutting the door was VERY funny!!!



Man we had a busy weekend!!!

Saturday was not to bad!! We went to the swimming pool for the first time this summer with some friends of ours! The boys had a great time!!! Makenzie wanted to get in so bad but I didn't feel like if was warm enough!!! So we sat and watched! She thought the kids jumping in the pool was just as much fun as getting in!!!

On Sunday Makenzie and I went up to a farm in Sadelia. We got to taste some wine... ok I got to taste some wine... the owners of the farm make rightin the basement!!! The cool thing about this was that the woman who lives there raised her daughter for 29 years. Her daughter also had very special needs!!! It was cool to meet someone that has walked down this road before us and to see how well they are doing!!! She wrote a book that I would love to read!!! One day I will cross that off my list!!!

Sunday night... well Monday morning... Makenzie decided to wake up around 12 am screaming, thrashing around, and coughing up VERY thick mucous! She was having a very hard time managing it and she was terrified!!! So was I!!! I called 911 and we took a ride to the hospital!!! They did a chest x ray and it was clear, She stopped coughing and seemed to have cleared it all out so they discharged us at 3 am with no car, no car seat and no ride home!!! We got home just fine and Makenzie seems to be doing much better!

In talking with her pediatrician he thinks it was from the allergy medicine I had just started giving her! I guess in the process of drying out your sinuses it can cause the drainage to become much thicker! Needless to say we have stopped that medicine!!!

Monday we were blessed to meet some wonderful people that I have been talking to on the internt!! They have been faithfully praying for Makenzie for the last 2 years and I was SOOOO honored to finally get to see them face to face!!! Although to short we had a GREAT time and their visit was PRICELESS!!! Thank you queenmimi and family!!! That meant so much to me!!!


Today we were back to therapy as usual and Makenzie did really well!!! We are gearing up for our trip to Costa Rica!! It is sneaking up on us very quickly!! Thank You for the many thoughts and prayers!!! Keep Praying!!! Prayer Works!!! THANK YOU!!

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