Sunday, June 29, 2008

Blah

The last several days have just been kinda blah. We had so many extra appointments last week that we were not able to do much fun stuff. Makenzie is doing well she continues to tolerate her feeds. We are trying 61cc's an hour. She seems to be gaining some weight and is also gaining some pudge! She has been sleeping very well at night which is a HUGE blessing! I have been skipping her nap and putting her to bed at 7 pm and normally she dosen't get up untill about 8 am. I however have been feeling quite tired, cranky, and plain burned out! Having the boys home all day has been rough. I love them dearly but they get bored and then they fight ALL day! They love to go to the pool but there is only so much we can do that. Most of the neighborhood kids are in day care and that leaves me as entertainer, cook, maid, driver, doctor, therapist, and so on and so forth! Oh well, this too will end.

We have an appointment with Makenzie's Rehab doctor tomorrow morning. Her PT is going to come and discuss botox with her doctor. It is important for the doctor and the therapists to talk because one knows the medicine and the other know Makenzie and what movements we are trying to achive. Thank You Pam for taking time to do this with us! There have been some things released by the CDC about Botox that are kinda scary and I hope to put these fears to rest. We would like to Botox he Pecks in hopes that it would release her shoulder and arms a bit. Please pray that this appointment goes well and that God leads us to the right choices! Makenzie has had Botox befor with no complications so it should be ok but......... how many kids choke on Goldfish crackers!!! That always lerks in the back of my head when doctors start talking about statistics!! God is Good and has brought us this far! He will not let us down... we will not fear!

Thank You for all of the continued thoughts and prayers! Keep praying! Believe! Prayer Works!!!!!

Wednesday, June 25, 2008

A Walk in the Park








We had a great day today! It started of with PT and then OT. She did great in PT. Makenzie sat for a long time pushing with both her right and her left hands!!! She rarely if ever pushes through her left hand! Yeah Makenzie!!! She side sat pretty good and was very happy. She didn't eat to well today but I think that is because I have been feediing her for about 20 hours a day. She probably is not very hungery! However this morning she was up to 23 lbs 10 oz!!! Thank You Jesus!!! Ypu can see fat on her now!!!!

We met with Child Find and it went VERY well. Thank You all for the prayers and thank you God for hearing and answering! We deceided that Makenzie will go to a school about 5 min from the house. The staff has been working together for a long time and it is a very established program. We will be righting into her IEP a time and person that will tend to her needs at all time while in school. She will not have a specific aid... that was not the point I just wanted to make sure that she had someone to help her be a part of the class at ALL times!!! Well, it is going to happen and be in writing on her IEP. She will not be starting school untill the end of Aug because this school in on a traditional schedule. All in all it was short and sweet and to the point. We will be meeting again befor the start of with the staff of the school and Child Find to discuss the detail of what Makenzie will need and what services she will receive!

This afternoon Makenzie must have been worn out because she feel asleep in the middle of our family room and slept for almost 2 hours. It was so cute seeing as how she NEVER does that! When she woke up I decided to take the kids to the park. I loaded her up in her new chair and we walked there. She loved it! She could sit staight up and see everything!! She loved watching her brothers on their bikes and scooters! When we got to the park she swang, stood by the rope ladder, swand on the bar above the slide, and when slid down the slide!! She had so much fun! She loves everything about the park. As soon as I figure out what we have to do for Make a Wish will will be asking for a big playground in the back yard for all of the kiddo's to enjoy!

We also got one step closer to the Hyperbaric Chamber being ready to go. We ordered some flow valves and they were the wrong ones so we are waiting on that and then it will be DONE!!! I can't wait. I got in it tonight and preasurized it and it worked GREAT! I am going to try to get Makenzie in it tomorrow to try and get her used to it a bit befor we get the valves and have to start using the iky hood! Pray that this goes well and we don't have any problems with her ears!

Thanks for all of your thoughts and prayers!!! They mean A LOT!!!! Keep storming Heavens Gates for Makenzie!! Believe Prayer Works!!!

Tuesday, June 24, 2008

Quick Update

Not much going on aroud here. Makenzie si doing well. She was a bit gaggy and tight today but all in all it was a good day. Her PT came today and did a few things to her new chair today. She did great! Her head control is getting so good! We took a field trip to Sam's club today with the chair and she did well. It was so much easier not to have to hold her and push the cart while trying to pick out the groceries! The boys raced her around the store all the while she just giggled and smiled! She loves her brothers so much!!

Tomorrow we are goingt to sit down with Child Find again tomorrow and continue to hash out Makenzie's IEP. Please pray that this goes well so that she can start school next month. Pray that we don't have to fight to get the enviornment and services that she deserves!

Well that is about all for tonight. Keep praying! Prayer Works!

"The LORD will fulfill [his purpose] for me; your love, O LORD, endures forever-- do not abandon the works of your hands."
(Psalm 138:8, NIV)


Dear Lord,
Thank you so much for your promise to fulfill your purpose for us. We thank you that your love and goodness to us endures forever, and we know that you will not abandon the works of your hands. Father, in this day we especially bring Makenzie to you and we ask that you would visit her with a healing touch. Lord, we ask that you would bring new areas of healing in the following areas: to her brain, her digestive system, her arms to touch and hold, her legs to walk and run and her mouth to eat and talk. Father, we ask that you would bring new resolution to these specific issues. We thank you that your hand is upon her daily, and we ask that you will cause her to prosper greatly in days ahead.
In Jesus' Name,
Amen

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Sunday, June 22, 2008

I am a Fish!

We have been at the pool all week!!! The kids are loving it! We went today with some friends and picked up pizza on the way. I thought I would eat befor we got in but Makenzie had other plans!!! She fussed and cried. I thought maybe it was because she was tired but as soon as we got in the pool she was in the best of moods!!! She just wanted to get in!!!!

She has still been sitting up pretty good. She hasn't done it for as long as last week but she has been sitting consistently. That works for me!!! Every new thing she has done has been a gradual thing. Then all of the sudden you can't remember a time that she wasn't doing that new skill! Please pray that she continues to improve a little every day with her sitting! I think she will be much happier and it would make my life so much easier!! (on a selfish note! :))

Makenzies reflux is still under control! We did have some acid this morning but it seems to have passed! We are now up to 59 cc per hour which is BIG! I haven't gotten her much over 50 with out major mucous and acid problems! She is also now up to 23lbs 1.5oz!!! That is a gain of about 1 lb in les than a week!!! GO KENZIE and or course YEAH GOD!!! I am hoping that if we keep her on the medicine that we can get rid of the reflux all together! When she gets to 24 lbs I want to try to feed her through her stomach again and try to get on a more normal feeding schedule so that we can work on her oral feeding better! Please keep praying for this! No more reflux and for her to tolerate 3 larger feeds per day with no night feeds!!!!!

We also have an immunalagy appointment on Tues and another IEP meeting. Please also pray for Gods hands to be in both of these appointments! Please pray that He would use these people to help in Makenzie's restoration!!! Please pray most importantly that in every bit of Makenzie's healing that God would recieve ALL of the Glory!!!! Thank you for all of your thoughts and prayers!!! They mean so much to our family!!!

Tuesday, June 17, 2008

Hart Walker

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Here are some pictures or a new walker that we are looking into for Makenzie. She did so well in it!!!! Yeah!!! We have been on a quest for the right walker for about 4 months!!! When we started looking we were only going to use it as a "stander" for weight bearing untill she was ready to start taking steps............. Well she is ready!!!!! She took a bunch of steps....... most were somewhat refexive but it is the movement that counts!!!! She has come SO far!!!!

 Part C early intervention team has a meeting every Monday. Makenzie's PT went armed with video from our therapy session earlier in the morning of Makenzie....... of course!!!! All of the therapist there we AMAZED at her progress since the last video taken a month ago!!!

We went to the  Mint this afternoon to show the boys where our money is made. We had a great time. It is amazing how many coins are made on a daily bases!! After our tour we went to the park and had a mini picnic in the park. The boys had a great time chasing and feed in the ducks!

Makenzie is now napping. When she wakes up we are going to go to a concert in the park for another picnic for fathers day with my family. It should be a good time!

We have also put Makenzie on a double dose of previcid(acid refux medicine). She is up to 58cc an hour!!!! She has also gained almost a pound in one week!!! 1.5 more pounds untill we will try bolus feeds again through her stomach!!! Please start praying for this to go well!!! Please also pray that she continues to eat well orally! She has continued to improve every day but still has a long way to go befor she can be tube free!!

That is about it for now! Please keep praying for Makenzie! God listens and wastes nothing! We are so proud of the fight in Makenzie and feel so blessed by God's Grace and Mercy!!! To God be the Glory!!!!

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Sunday, June 15, 2008

Post in pictures and videos of Makenzie SITTING!

Here is Makenzie SITTING UP! She had a great day!
The video was shot after about 5 min. She was starting to get tired!
We got a new camera. Some of the pictures are a bit blurry..... sorry I guess we still need some more practice with it. Oh well!!!

Yesterday we went to the pool and Makenzie loved it! She stayed in the water for 30 min befor getting cold! In the next couple of weeks we will be taking her there for water therapy with her PT! We also spent some much needed time with some good friends at a BBQ last night and had a great time! Makenzie loved sitting in the grass and watching all of the kids!

Thank You for all of your thoughts and prayers! Keep Storming the gates for Makenzie's restoration!

Specific Prayer Requests: Pray for Makenzie to start sitting by herself, Pray for her Gut to continue to heal, Pray for her arms and shoulders to loosen up so she can reach and play!!! Thank You!!!


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Friday, June 13, 2008

Great Week!!!

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Makenzie had a great week! She did wonderful in therapy and she has been eating from a spoon great! She has also been talkin a lot!! She tells us when she wants more at least 50% of the time!!! She has come so far! God is so GOOD!!!

Life is very busy! Filled with therapy and entertaining the boys now that they are out of school! It is starting to warm up here! We joined a pool this year because it is something that ALL 4 of the kids enjoy! It has been very challenging for me to come up with stuff in between therpies that we can all do. We take Makenzie everywhere but time is a problem with 2-3 therapies and her need to take a nap!

We got an advocate for Makenzie so that we can get her IEP done without to much trouble. Hopefully the school district will take us seriously now! Hopefull Makenzie will start preschool the end of July with all of the supports and services that she needs and deserves! Please pray that this process goes smoothly!!!

Keep praying for Makenzie! Please also say and extra prayer for a little boy named Reece who had a near drowning accident recently! His parents just recieved not so good MRI results and are really struggling! We did too and have come so far since that dreaded day when the doctors told us there was little hope! That was not true for Makenzie and will not be true for little Reece! Our God is gracious and much bigger than any of this! Storm the gates for these kids!!! Thank you all for your continued love , support, and prayers!!!!

Monday, June 9, 2008

Here comes the Bride!

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My brother is off the market!!! We spent this weekend celebrating his wedding! It was a lot off work but a TON of fun! It was a beautiful wedding and great party! I finnaly have a sister! His new bride is a wonderful woman! I couldn't have asked for any better sister in law of aunt!

Makenzie did GREAT!!! We didn't get home untill after midnight last night! She was so happy! She loved dancing with her uncle, brothers, grandpa, and mommy! She even did the congo line!!! She was so cute!! The boys also had a great time!!! Kaleb was so handsome in his tux!!!

Makenzie is doing well! She is tolerating her feeds great! We put her back on her reflux meds and she hasn't had any puking episode in 2 days!!! Yeah God!!! She also is only refluxing 2-3 times a day!!! Well I am off to bed! It is Monday again...... back to the grind!!!

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Thursday, June 5, 2008

Crazy Week

Hello All! Sorry about the lack of posts this week! It has been crazy! Makenzie is feeling much better! She still has a little bit if a runny nose but nothing like this time last week! Thank You Jesus!!! I was ready for the nut house!

We had a meeting with Child Find on Monday. It was very long and unproductive. We went iin to write a draft of Makenzie's IEP (education plan) for preschool. We left with a blank draft of Makenzie's IEP after nearly 3 hours! Befor we went to Florida, Kenzie and I went to a school to check out on of the progams this school distric offers. The program was good but not right for Makenzie. Public Schools have some therapy but not like what Makenzie gets at home and not really anything to get excited about. With that being said sending Makenzie to preschool would be about socialization. I told Child Find that we wanted to put Makenzie in a blended classroom with kids her age, with and without special needs. Makenzie loves kids and they are a huge motivation for her. They were less then thrilled and made some statements that completley underestamated my daughter!

So,today we went to visit another school and it was great! The hustle and bustle of the classroom had Makenzie smiling from ear to ear! I was able to talk with the teacher and she said all of the right things! They were very warm and inviting unlike some of the other classrooms we have asked to observe. She assured me that if Makenzie was a part of her class that every activity that they did would be adapted for Makenzie's needs!!! I am so excited! If we can get past the politics she will be starting the begining or end of July! I will be setting up another appointment with Child Find to fill in that blank draft with more fitting goals and a more suitable classroom setting for Makenzie. We will also be asking for a full time aid to assure Makenzie is safe and gets the most from this experience. Please pray that this goes well and that the district doesn't make this a struggle or a headache!

Makenzie seems to be back to her happy self! Even with her being sick and not doing well with her food she only lost about 3 ozs!!!! Yeah God! She was amazing in therapy today and was full of babbles!! She has been making a lot of new sounds and is responding to questions and statements with very good, strong noises!! We are so proud of Makenzie!!! God is in control and we are so thankful for His many blessings!!! Keep Praying!!!

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