Hey!! Sorry for the lack of posting the last couple days!!!
Life has been good! Makenzie had a very good week!! She has been doing excellent with sitting and keeping her head up MUCH more!! She has also continued to enjoy all fours and is doing SOOOOO much better!! She continues to use her hands more every day!!I put her on the scale today and she has gained one and a half pounds in the last 3 weeks!! Yeah!! Keep Growing Girly!!! Oh and her rash is completely gone!!!!God has been so faithful!!
I have been in communication a lot with Makenzie's school the last couple of weeks! As the school year winds down I have a lot of decisions to make. Makenzie loves school and the staff at her school has tried very hard to meet her needs. However, some of the most basic aspects has still not been met!
Makenzie needs proper seating to support her. This will allow her to better use her hands to work on fine and gross motor skills! They do not have this for her. There is a ton of opportunities at school for her to practice these things. By not having access to proper positioning she is missing out on a lot. Yes they sit with her at the table and help her do the activity but she is really unable to help.
Once again I find myself in the mama bear mode! Whats new!! We will have a meeting with the Special Education Supervisor soon to discuss how the district can aid in making sure that Makenzie's needs are better addressed next year!
I am sure they do not have many kids like Makenzie. I understand that we are exploring uncharted territories. I am trying to keep my cool even though red tape makes me CRAZY!!! I hope that all of the school staff understands that I love my daughter and I am only speaking up on her behalf! It is her right! I have been doing this kind of stuff for the last two years and am not about to throw in the towel now!!
So please pray for these decisions! Pray that God would open the doors so that Makenzie can have the best teachers for her next year!
Costa Rica is 6 weeks away!! WOW! Keep praying for this trip!! Pray that God allows the new cells to thrive in Makenzie and that they go to the right places in her brain!!! Thank You for all of your love and support!!!
Friday, May 29, 2009
Hey!! Sorry for the lack of posting the last couple days!!!
Monday, May 25, 2009
We had a great weekend!! The boys went with my parents to the cabin and had a GREAT time!!! J rode his bike almost 23 miles!!! Wow!!! You go kiddo!!!
Saturday Makenzie and I went to a really good friend's house and spent the day!! It was great!!! She had some of her relatives from out of town there. I don't quite know how to explain what her Aunt and Uncle do exactly, but it was about the energy that surrounds us and how it affects our lives!!(yes that energy being God.. no worries.. I haven't jumped off the deep end!) We talked a lot about how stinking thinking really brings us down and that although both of our daughters have a brain injuries we have SOOOOO much to be thankful for! I know that! Really I do but there is still so much stress! New out look on life day!!! GREAT stuff!!! Very Refreshing!! Thank You S!!
Sunday was the normal church, SAM's Club and lunch! It was nice to get to have a quiet lunch out with my husband! Thanks mom!!!
Today.... well today it did.... NOTHING!!! Yes you heard me right!!! Ok well I did all of the many thing it takes to keep Makenzie happy and healthy but other then that we just relaxed!!! I can not even tell you the last time I had the chance to do that!!! It felt good and I am sure that it won't happen again anytime soon but it was much needed!!!
As for Makenzie... She is doing GREAT!! We did a lot of massage today and some walking!! She is also doing great with sitting!! She sat with a bit of help from me for almost 10 min!!! Yes.. I had to help her balance a bit but never with more then one finger! She held her head up only dropping it a few times and NEVER folded up!! WOW!! That is HUGE!!! Her greatest motivation is watching..... herself!!! So I put the computer in front of her and played her newest slide show and she sat through it twice!!
Well I think I am going to end this lazy day by going to bed early!! Thank You all for the prayers and support!!! We are now less then 2 months away from Costa Rica!!! Thank You ALL so much for the support with that!! We inch closer and closer everyday to our goal and are AMAZED by all of your generosity!!! THANK YOU!!!! God Bless you all!! I hope this Memorial day was a good one!!! Thank you to each and every man and woman that has sacrificed to give us all of the freedoms we take for granted!!!
Friday, May 22, 2009
Another couple GREAT days here!
Makenzie seems to be staying well! She still has a rash but it is looking MUCH better! She is having some tummy troubles and is having a hard time getting back up to her full feed rate. I am not sure what that is about but her reflux has been really bad the last few days! I spoke with her doctor this afternoon and we are going to up her medication a bit for the reflux and possibly put her on antibiotics to help clear her sinuses which always upsets her tummy because of the gagging and drainage! Other then that she is very happy and working really hard!!!!
She had PT yesterday at home and did great! She worked on half kneel, tall kneel, and all fours. The pictures tell most of the story but what I see that you may not is that she is bearing ALL of her own weight into her arms, hands, and shoulders! She did not have any part of her upper body on her therapist and was push and holding HERSELF up all alone!!! This is amazing considering that she didn't really even realize she had hands and arms 6 months ago!!!! WOW Makenzie! Thank You God!!!! Give her another 6 months, some Stem Cells, and some intensive therapy at the Napa center and she will be crawling!!! I BELIEVE she can do it!!!!
Here she is during PT at Children's doing it again!
We have a full access pass to the rides with NO waiting in line and 6 tickets to come back again this season! WOW!!! Thank You SOOOOOO much to Elitch Gardens for going above and beyond and making the amusement park one more thing we CAN do!!! I would much prefer to open and close the park, stand in all the lines, go to the bridge and get soaked by the splash of the roller coaster when I was too hot, and make myself sick eating to much cotton candy! I can't! Makenzie gets hot way too fast. She gets dehydrated fast, and overstimulated. We have about 3 hours to stay from the time we pull into the parking lot until the time we pull out. If the ride line is 45 min the boys only get to ride 2-3 rides! Once again THANK YOU!!!! It is the little things that are NOT little to this family!!!
I also had another meeting with Makenzie's school this morning. I will post more about that in a later post as I have already posted a novel!! Thanks for hanging in there!!!
Please keep praying!! Costa Rica is only 7 weeks away!!! Please pray for God's blessing and for the Cells to go where they need to! Pray Pray Pray!!! Believe... Prayer works!!!
Wednesday, May 20, 2009
Makenzie seems to be doing ok! Yesterday was a bit rough as she did not sleep well due to all of her snot! She has a hard time swallowing it and then she gags and pukes buggers and acid...tmi...well it is the truth! So... now she is WAY off her normal schedule. She took a nap yesterday ( she hasn't taken a nap in almost a year!) and went to bed at 6:30pm. By about 4:00am she was trying really hard to get me to agree it was time to wake up! Finally, as I saw the sun shinning in through the cracks of the darkening shades I conceded! 5:30am! Yikes! So needless to say she is now taking a nap!!! AHHHHH! SO I guess I will keep her up late if she is still doing better and hope that she sleeps until 7am like usual and we can get back to normal!! Pray for us!!! LOL!
Below is a short portrayal of how one mom describes being a mom to achild with special needs! I have seen this many times and decided to post it!
Keep praying! Costa Rica is less then 2 months away!! WOW! We are getting so excited!!! Believe...... Prayer Works!!!!
"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Monday, May 18, 2009
Here are a few pictures that I took at Elitch Gardens! We had a lot of fun! Makenzie did well and stayed fairly happy all day!
I took Makenzie to the doctor today for a rash that appeared late Friday! They said that it was a viral rash... of course there is nothing you can treat it with! Tonight she was pretty snotty so I am thnking that the rash is not the only fun we are in for! I sure hope I am wrong!!! Please pray that Makenzie stays well and that her body will fight this off quickly!!! Thank You all for your continued thoughts and prayers! Believe... Prayer Works!!!
Saturday, May 16, 2009
Makenzie had a bit of a rough day today! She was very tight and pretty cranky! Yes every so often she is cranky! I think she may have a bit of a cold as her daddy was sick at the beginning of this week and I have been a bit under the weather myself! She didn't sleep well last night and wanted to be held ALL day! She is sleeping well right now so that is a good thing!
We had the privilege of meeting a family right here in our back yard that has been walking down the brain injury road for 6 months! Their daughter Cici's story can be found here or in the "my friends" link list on the right side of Maknezie's blog. We had a great time talking at a fundraiser they held to help with some of Cici's uninsured medical expenses! I would much rather her daughter and Makenzie be well but since reality is that they both have brain injuries it was very nice to meet someone that could understand most everything that we have been through!!! They just recently got back from a trip over sea's with Cici for Stem Cell Therapy!!!! Please take time to say a prayer for this beautiful little girl who has just begun her fight to full restoration!! Thank you J and family for the great afternoon!!! I will see you for sure next month!!!
We are off to Elitches tomorrow for Discount Tire's summer party!! The boys are SUPER excited!!!! As I tucked them in tonight my oldest was making a list of all the things he needed to remember to do and bring!!! I LOVE my Kids so much!!! I remember when I was their age how excited I was to go ride the roller coasters!!! Now I get to see that look on their faces!!!
I would be lying if I didn't tell you I am a bit nervous to take Kenzie! She gets dehydrated really fast and it is going to be a bit warm tomorrow! I also don't know how long she will be ok walking around there! My boy's, I am sure, will want to be there a long time!!! Please pray that Makenzie LOVES all of the people, rides, and beautiful flowers and will do well so that my boys can stay and play!!!!!
With that said I am off to bed so that I can PLAY ALL DAY!!!! Oh to be a kid again!!! Keep lifting those prayers up!!! Believe... Prayer Works!!!
Wednesday, May 13, 2009
Wow! What a busy start to this week!!
Monday was not so bad as we just had PT and school. Yesterday I had a IEP meeting with the teacher and specialists at Makenzie's school. We sat down to discuss this year and what we can do to make next year even better! Makenzie LOVES school! She so enjoys being around all of the other kids and activty that go on there! We decussed Makenzie's seating at school and I feel as though she needs better access to the classroom. They have a chair there for her but it doesn't support her well at all. Her chair that we have at home is WAY to big and heavy to bring back and forth to school everyday! The decision was to begin the process of ordering Makenzie her own chair just for at school!!! This is a huge YEAH GOD!!!! Giving Makenzie the support she needs will help her be able to paticipate and be much more independent in playing with her peers. We will still need to have several more meetings before school gets out for the summer but this is a HUGE start!!
I am not sure if I mentioned summer school in anther post but Makenzie will also being attending pre-school this summer from July 19th until the 3rd week in Aug!
Today we had an appointment with Makenzie's rehab Doctor. I wanted to talk to her about the MRI she wanted of Makenzie's brain before we did Stem Cells. At the last appointment we talked about this therapy. She has been doing research on Stem Cells and is all for us going!! She wanted to get some pictures of her brain before and then in 6 months or so to try to document an improvement. I understand this from a science perspective but I have really been stuggling with it from the mommy in me! In order to do the scan Makenzie would have to be put completley under and posibily need a breathing tube for the 45 min scan. That is BIG! So today when we went in we talked about why she wanted it. Then the big question..... "If it was your child... what would you do?" She paused for about a minute.... and then with out hesitation said, " I wouldn't do it" WOW!!! Thank You for being so willing to honestly answer my question!!!! Yes, I guess it is still a very hypathedical question but I have great respect for this doctor. She knows the love of a child and the art of medicine!THANK YOU!!!!
We then rushed home to be here for speech therapy. Makenzie's therapist came with the Vice president of Dynavox (one of the leading brands of talkers) I had the chance to pick his brain for nearly an hour about what their products had to offer in respect to what Makenzie's needs are! I learned a TON!! We just keep getting closer every day to find the right device for Makenzie!!!
On that note..... Mother's day brought a very unexpected blessing! I got a call from Makenzie's Grandma. She was so excited and told me she had something amazing to tell me. OK, I am sitting down.. now I am ready.... ok not really... I was in SAM's club holding Makenzie with one hand on my hip while trying to push the cart and pick up 2 gallons of Apple juice, while talking on the phone.... yes it was a laughable site.... go ahead you won't hurt my feelings... laugh away!!! She had called to tell me about a response to a prayer request she had made to her church. A couple had brought her a LAPTOP COMPUTER for Makenzie!!!! HOLY COW!!! Is God not GREAT or what?!!!!! THANK YOU!!!!! THANK YOU!!!! THANK YOU!!! This mean SO MUCH!
Now on to the Fundraiser!!! WOW!!!! We are SO CLOSE!!!!! I know God will provide and we continue to trust in His continued faithfullness!! To all of you that have sent donations THANK YOU!!!!!! THANK YOU!!!!!!!!! THANK YOU!!!!!!! If you sent a donation to Makenzie's Benefit account and would like us to know who you are please e-mail us at email@example.com! We would LOVE to thank each and every one of you personally!
Thank You all for your Love and Support!! With out you I am not sure where our family would be right now!!! Most importantly.... Keep PRAYING for Makenzie!! Believe... Prayer WORKS!!!
Sunday, May 10, 2009
"I would appeal to God: He performs wonders that cannot be fathomed, miracles that cannot be counted."
“Be joyful in hope, patient in affliction, faithful in prayer.”
(Rom 12:12, NIV)
Please keep praying!!!
Saturday, May 9, 2009
TEARS!!!! LOTS AND LOTS of TEARS!!! I have waited 2 years for this moment!
Makenzie had been walking for a while befor I took this video and was getting a bit worn out!
We have used walkers with Makenzie a ton! She has never really cared much for any of them.In the past she has just stood in them. I have pulled the walker forward to get her to move her feet and sometimes she would and others it was a no go! We have moved her feet for her. Most of the time she puts her head down in protest until we take her out!
Today we tried her Pony out after she protested the stander! I put it on the hard floor and could feel Makenzie shifting her weight. Every time I would ask her to take a step she would lift up her foot and it would get stuck on the bar in the front and then she couldn't get it down! So I got out the Pacer and wiped the dust off of it... we haven't used it in months. I stripped down all of the extra pieces so that the only support that was still left was the hip support. Then I put her in it!
She stood up, gave me a big smile, and took OFF down the hall! WOW!!! To God be the Glory!!! I am left speechless!
Thank you for all of your continued prayers! They mean so much!! Keep praying for Makenzie! Believe... Prayer Works!!!!
Friday, May 8, 2009
Sorry.... I know that you are all probably on video overload! Here is some video that I took today of Makenzie and her new speech therapist. She has so much fun using the talker and playing games! Her therapist continues to tell me how amazed she is at how fast Makenzie has picked this up!!! She was a bit tired this afternoon as she had 2 PT sessions before this appointment but she still did really well!!!
The first video is the auditory scanning with a switch to activate it. She is doing so well using her hands to push the switch! Her PT and I were talking today about how incredibly amazing it was that she was doing so well as 6 months ago we still were not getting ANY purposeful movement from her hands/arms!!! God is SO good!!
There are many different types of talkers. They all have different functions and vocabulary. This is what we are trying to sort out right now. What is going to be the easiest way for Kenzie to access the talker, what format do we want the vocabulary to be in, and i am sure the list goes on and on!
Her therapist brought a college with her today that works with head tilt as an access to the talker. She put a little sticker on Makenzie forehead. (The video above is Makenzie trying it out) Some how that synced with the talker and a little hand followed where her head pointed on the screen of the talker. She did alright but still MUCH preferred the scanning and switch! She said it does take a while for kids to get that they are making the courser move!
Next week a rep from Dynovox (a brand of talker) will be in town and spending some time with Makenzie's therapist. She is going to hopefully get him here to meet Kenzie and show us their product and hopefully Makenzie will get to try a couple out!!!
We are now only 9 WEEKS away from boarding the plane heading to Costa Rica!!! WOW time is just flying by!!! Please keep praying that God will bless this trip and through his will and plan will send the stem cells to the parts of Makenzie's brain and body to bring more healing! We are hoping for the Microwave version of healing but I will be thrilled with a crock pot version as well!! ( if you didn't get that sorry! Steph and Pam that was for you!!! LOL!) Please continue to pray for our fundraising efforts!!! We feel SO BLESSED! So many people have given! So many people care!! THANK YOU!!! We are getting closer to our goal! We still have about $3000.00 to go. 9 weeks left! I know it will happen! This is God's child! We continue to stand in his arms and ask for healing! It is His timing, his will, and we will wait patiently for his answer! Thank You! Keep Praying!!!
Thursday, May 7, 2009
Makenzie is so funny! The second we step into her room at night she sticks out her lip and starts the pouty face!!! Then when I put her down the tears start flowing! It is so cute! Sorry about the bad video skills! It is very hard to aim a camera while trying to put a 26 lb princess in the bed!!! We did this 4 times tonight and she finally let me lay her down this time and went to bed! Silly girl!!
She is also doing great in therapy! Following directions and interacting more and more everyday! She works... and plays so hard!!! I am so proud of her!!!
Wednesday, May 6, 2009
A few months ago we met a family who also has a son with CP. He is 8. They are a great family with amazing hearts! I met them at church with a 26 pound princess on my hip. They asked me if she had a chair. "yes" I relpied, "However, it is so heavy. It more work to lug it around then to just to carry her!" She told me to let her know if we ever needed it and gave me her number. I have seen them in passing at church and ran into her downtown at the Medicaid Rally last month. Well, this week I took her up on her offer!
I have been having some issues with Kenzie's school around seating and positioning. They have had 8 months to get know know her and her needs. Sadly 8 months later she is no where closer to having optimal access to her enviornment at schooln then she started the year with. They do not have a good chair for her. I can't transport her chair back and forth as it weights like 70lbs. I do not have a ramp or adapted van and lifting that 4 times a day four days a week is just not going to happen!! It is very hard to play with goo, paint, glitter.....or have therapy, if she doesn't have proper support!
We had a meeting last week and they were very supportive and kind! They are trying their hardest to help her. Yes, I know there is only one month of school left. The sooner we figure this out the better. Next year she can start school and everyone will be ready!!!!!
So back to the kind woman from church.... I called her up this week to see if she still had her son's old chair. Yep! Wow! We went over and picked it up on Sunday. It is perfect!!!! There is a few things that need tweeking but other then that it will work!!
Makenzie's therapist found a new harness, lap belt, and high-low base, collecting dust at another client's home. Now it will fit next to the tables at school!!! God is sooooo good!!! Wow dooes he evder provide!!! The pictures in this post ar of her in her new chair! She looks so good!!!
Please say a prayer of Thanksgiving tonight for this!!! It could have taken the school district months and months of cutting trough red tape to get her a chair that meets her needs!! Thank You Jesus!!! Please keep praying for Costa Rica!! It is quickly sneaking up on us (9.5 weeks)!!! Very exciting but lots to get done first!!! Please... Believe Prayer works!!! God Bless!!
Monday, May 4, 2009
We had a good weekend celebrating Josh's birthday! Lots of kids and birthday shopping! Makenzie got another GREAT Massage tonight! Thanks Jessa!! Love Ya! I have a crazy day tomorrow so I am going to leave you with a few pictures and head to bed!
Sat. marked the 10 week mark until Costa Rica!! Pray and Pray and Pray! Pray for God's continued blessing with our fundraisers and for God to place the cells where they need to go when we begin the treatment!!!! Thank You All!!!
Kaleb's 8th Birthaday!
Hide its the camera!