Makenzie is doing so well!!! it seems like there is something new every day! I love the above video because it shows so many great things! One that she is holding her head up well in prone. Two that she is so happy and I just love that giggle! Three... look how well she is holding onto those shakers! Four did you notice how fast she is following direction when asked to lift her head up!? So proud... oh so proud!!!
I am sure you will be seeing more pictures and videos up on this blog as we are gearing up for stem cells! I want to be able to clearly go back and have documentation of before and after treatment! So just bear with me! Not only that but I just love to look back and see Makenzie's journey to healing in chronological order! Yes I guess this has become my new version of creative memories!
We once again had a busy day starting with OT. She Had a great time and worked really hard! Then we headed off to the school for our meeting.
The meeting went well. It was bit frustrating because there are so many people involved! I love Makenzie's teachers and specialist! Some times though I feel like the program/therapies is somewhat cookie cutter. My daughter doesn't do well with a one size fits all program. I think the meeting was very helpful for everyone and it allowed me once again to express my priorities for Makenzie. I felt my concerns were addressed and that there would be follow through.
I know that the school issues are not soon to end. However, I want to make sure that her experience starts out on the right foot! To me it is kinda like a bad habit that is hard to break. If the school understands Makenzie needs, our voices are heard, and the school provides the equipment and services that Makenzie deserves, we won't have as many bad habits to break later on. I am sure those of you that have already dealt with this system for many years are laughing right now. That is ok. I need to live in dream world on this issue for now!!! LOL!
I have a special prayer request tonight! Please lift up the family of dear friend of mine. She has been a powerful prayer warrior for Makenzie the past 2 years. Her son-in-law has spent a few days in the hospital awaiting surgery to diagnose something that could be very serious! Pray that God would give them answers to what is going on so that he can begin treatment and get back to his beautiful family!
Thank you so much and God Bless, Pam
Tuesday, April 28, 2009
Monday, April 27, 2009
Makenzie continues to do really well! We had a somewhat uneventful weekend which is very nice sometimes!
We went over to some friends house on Sat. evening and had a great time! It was past Kenzie's bedtime though so I thought I would lay her up in bed and see if she would go to sleep or maybe just have a bit of quite. I put her in the middle of the bed on her side and walked out of the room. Not a good plan! I grossly under estimated her rolling abilities! Yep... she rolled right off the bed! I felt horrible but at the same time so glad that I can say she is moving and I can't do that anymore!! WOW! Yeah God!
After our little mishap Makenzie got a FULL body rub down by my friend who happens to be a massage therapists! (Thanks Jessa) Makenzie turned into a jello baby! She was really, really loose! It was great! Now I just need to clone her so that Makenzie can get a good rub down everyday!!! She showed me how to rub her feet and hands. I have been doing it 2 times a day and her hands are sooo much looser! WOW! I massage Makenzie all the time but knowing exact places is helpful! I am sure her therapists have showed me before but somewhere I missed that information!
I went to Makenzie's school today to talk to them about school for the summer. I explained to them my concerns about the long break. It will be even longer for Makenzie because we will be in CA for suit therapy until the middle of October. That is a VERY long break (June-Oct) for a kid that thrives on structure! We didn't get anything resolved but we are going to keep talking and try to find a resolution! There are preschools that run off of the track/year round schedule so my hope is that she can attend one of those until we get back at the begining of October! Please pray that God would open doors and help Makenzie get the services she needs!
We have another meeting tomorrow at the school with her teachers and therapist to discuss a few other things. It is so hard to stay on top of Kenzie's needs as they are changing so rapidly! I love Makenzie's school and trust them to care for my princess! They do a GREAT job and she loves to be there! Please also pray this goes well as we all want nothing more then to see Makenzie heal and grow!
Please keep praying! We see the power of all of your prayers every day!!! Believe.... Prayer Works!
Friday, April 24, 2009
Makenzie has had a GREAT couple of days! Therapy is going really well and she just seems so bright eyed and happy! All of her therapists have noticed a definite decrease in her tone in her hands and arms! She is doing very well walking with mush less support and bearing weight and starting to do her own weight shifting! It is amazing! She is also using her hands a ton!!
She had a crazy morning today but she did awesome! She had PT here at the house, then we jumped in the car and had PT at Children's , then we jumped back in the car to come home and had been home 5 minutes before her new Speech therapist came!
She did great bearing weight through her arms in side sit with her head up. At Children's her therapist got her in all fours with out any complaints, and Speech went SUPER!!!
We used the same talker that she brought last week. This time she had it all set up for Makenzie only this time it was harder! She had 3 different categories and Makenzie got to choose "more", "stop", "go", and she got to choose what activity she wanted! She picked the monkeys over and over again! This time she came ready with another monkey game. She had to pick what color she wanted the monkey to be. Then the therapist asked me to pick a color. I picked red. Then we told Makenzie to make the Monkeys red and ........ drum roll....... she did on the first try!!!!!! I am so proud of her! I wish I could explain all of this better! What I can say is this is amazing!!!! Her therapist kept telling me how smart Makenzie is! I feels so great to have a way for her to show us what she knows and a way for her to participate in her learning! I have a preschooler that I can teach colors to! It is amazing!!!!!! This is going to be so good!
OH I AM SO EXCITED!!! Even though she has brain damage she has so much to say and learn! To think that I can teach my little girl her numbers, letters, colors, how to spell, the list goes on and on! The thought that she can tell me what she wants! OH MY!! Even better yet... while we were doing this she was making new noises! She made the "ye" sound when choosing the color yellow and said what sounded like "yea" when she pushed the switch for more and I said "Makenzie wants more!"
Sorry this post is so erratic! I have so many thoughts running around in my head! Sorry! Please keep praying for Makenzie! We leave for Costa Rica 11 weeks from tomorrow! I am starting to get so excited! Every day I hear of another child that has greatly improved from this and I can't wait! Please start praying for our safe travels and that God would send the cells to the places that Makenzie needs them the most! Pray,Pray, Pray!
Thank you ALL so much for all of your support! If you have donated to Makenzie's Stem Cell Trip We THANK YOU from the bottom of our hearts!! Words can not describe how blessed we feel! We still have a long way to go but we continue to trust that God will provide!!! Our letter describing our trip and details on donating can be found at the top, on the right hand side bar of her blog! Please pray about helping our family and Makenzie! Believe..... Prayer works!!!
Wednesday, April 22, 2009
Makenzie has been doing a super job walking! She is keeping her head up while taking steps and hasn't need any support through her trunk and hips!!! YEAH! Thank you Jesus!!! 11 weeks and counting until Stem Cells!!!!
Tuesday, April 21, 2009
Today was another CRAZY day! Makenzie and I took a trip downtown to a rally today. Our state is proposing a huge cut in Medicaid funding . I know that we are a in a struggling economy however, it seems as though the government loves to take first cuts from those that have no voice and can not care for themselves. I am by no means a polititian. What I do know is that as a mother of a child that relies so heavley on our government systems that I better at least try to stay up to date and be a voice for those that can not speak up!
We had a ton of fun! We met a few new people and saw a few friends. It was a beautiful day and we both enjoyed being out side! After the rally we walked down to the capital to sit in on some of the talks regarding this issue. Unfortinatly we didn't have enough information and couldn't find the right room. Man was that place buzzing! It was still worth it as I got a better feel of the mood and severity of what is going on!
Makenzie is doing well! She is rolling around a lot! She will have her first real therapy session with her new speech therapist on Friday. In speaking with the therapist we are both hoping to decide on the best talker for Makenzie with in the month! Don't hold me to that though!!! There is a lot to choose from and she can only get a new one every 5 years... I think. (if they don't cut that out of the funding!)
We now have ALL of our passports! We have plane tickets! We have hotel reservations! Costa Rica is only 11 weeks away!!!! I am sooooo excited! Not only am I excited about the Stem Cell therapy but also getting to FINALLY stand face to face with some very dear friends that I have met along this journey!!! They will also be spending the week in Costa Rica with their son for SCT! We will get to spend the whole week hanging out, talking, and celebrating our special kids together! WOW! God is so good!
Thank You for all of your prayers and support!! Keep praying!! Prayer Works!!!
Thursday, April 16, 2009
So for the last 2 years we have spent a lot of time in the doctors office. So before I start I want to say a BIG Thank You to all of the medical professionals that have been there for our family along this journey. Thank You to all of the Doctors, nurses, medical assistants, receptionists, and billers..yes you too! As a mother it can be very intimidating to navigate the medical system. I am not going to lie and say that it has all been peaches and cream but looking back I have realized how truly blessed we have been! Finding good doctors has not proven to be easy but we hit the jackpot with our team!!
Even still, this part of caring for Makenzie can be..well... frustrating! There are so many different components that have to come together for all of this to work! Many times if you are not loud and persistent your child gets lost in the shuffle! I really do try my hardest to be kind and understanding but as Mama bear sometimes it is impossible! Makenzie has what she does because God has given me the strength and the knowledge to manage these systems. To understand what my daughter's rights and needs are and to advocate for her medical care! I do not take any credit for this as God is the one one strengthened me! I am taking care of God's precious treasure and hope that He is proud of the job I have done in getting Makenzie these much needed services!
We have both doctors at Children's Hospital and at private clinics.
I want to start with the first and only team of doctors that knew Makenzie before her accident, her Pediatrician's. When my oldest son was born I spent a good amount of time interviewing pediatricians. (yes, I have been researching now for 12 years!)As a first time mom I wanted the best doctor to care for our very fragile baby that could get pneumonia from being cold after a bath. HAHA! If I only knew 12 years ago what I know today! I found a wonderful group of doctors at, Pediatric Pathways, that have started caring for each of my four children at just a few hours old! This group has stood by us through the last 2 years and has truly been God's hand in the form of doctors in Makenzie's life! They may not have been the treating physicians while Makenzie was in the hospital but they listened to me yell and cry for hours... on their personal cell phones! They called the hospital to talk to the staff and discussed some hard stuff with us when we were at the point when we didn't know if Makenzie would pull through! They advocated for our family through this process and continue to do that to this day. After Makenzie came home they helped me organize all of the doctors I would need. Currently they check Makenzie's weight. When she gets sick they are there 24 hours a day! They have even seen Makenzie in their office on Sunday mornings! Amazing! I have 2 personal nurses in their office that know my daughter inside and out! Any time I need paperwork filled out, prescriptions written, or orders faxed they do it immediately! They listen to me and never think (well at least not out loud!) that I am crazy! They respect my opinion! They know that I am in tune with Makenzie and that I understand her needs better then anyone else! They are willing to admit when they don't know something and have referred me to some pretty amazing specialists! I know that God led me to this practice 12 years ago for a reason! They are more then anything I could have ever asked for or dreamed about! THANK YOU!!!
Makenzie is also followed by the Rehab Clinic at the Children's Hospital. Her doctor there is also wonderful! Some of the services we receive in rehab are, botox, medications, and braces. This clinic also fills out all of the paperwork on Medical Necessity for all of her therapy and equipment! Her rehab doctor is also very open to alternative medicine! We have had many long conversations about all of the treatments that I have researched and done! We talk about the pros and cons of each therapy. This doctor has also been a very awesome advocate for my daughter!
Makenzie has a GI doctor to over see her G tube feeds and nutrition. They handle treatment of her acid reflux and any kind of infection with her feeding tube site. GI writes Makenzie's prescription for her formula as well. They also monitor her weight gain to make sure she stays a healthy weight for her height. I also have a personal (OK so she is not just mine... but she knows what is going on with Makenzie) nurse in this clinic! We have nutritionist in the GI department that answers my questions about fluid intake and formula dosing.
IR replaces Makenzie's GJ tube under fluoroscopy (x-ray) . Makenzie needs to have her tube replaced every 3 months or when it gets pulled out! Yes that happens! Usually this occurs on Friday at 5:55pm and requires a trip to the ER to have it replaced! That being said, Yes they come in and take care of my girly even on the weekend so that she can eat! WOW!
Special Care Clinic
The Special Care clinic, also at Children's, takes care of any of Makenzie's needs that are more then what her pediatrician deals with. Her doctor in this clinic is the one who finally gave us the go ahead on the GJ tube that proved to be the answer when it came to getting Makenzie to gain weight and stop throwing up! We have only seen this doctor a couple of times.
Home Health Care
All of Makenzie's therapies happen in our home. This is possible through a home health care company. They do all of the billing and insurance paper work! They are the ones (along with very thuro notes from her therapists) that have been able to continue to get so much therapy approved for Makenzie! WOW! I would say they have done a fabulous job!!!
We also have a separate HHC that delivers Makenzie's formula and feeling tube/pump supplies. They have been great!!!! We have ALWAYS had everything that Makenzie needs! They have been wonderful at communicating with Makenzie's doctors to get correct orders so that Makenzie has all of the right formula and supplies!
There is SO much more to the care of Makenzie but if I put it all in one place this post would turn into a novel! It is already coming close!!! Please check out the links on the right side of her blog for more info on her other services, treatment, and equipment!
I am honored to say that each of the above clinics and companies work with my daughter and have played such an important role in Makenzie's healing! Please pray for these people and places! Pray that God would bless their families and each of their clinics. They are such an asset to our community and most importantly, for our family, Makenzie! Thank You and God Bless!!!
Please look at the next post if you haven't already read about Makenzie's Speech/Aug Com Evaluation it is very exciting stuff!!
Wednesday, April 15, 2009
Ok... before I get to the point of this post.... here is a cool video of Makenzie playing with one of her toys! I am so proud of her! 6 months ago I could have never imagined Makenzie doing this!!!
So now for the big news! Makenzie had a evaluation with a speech therapist that does Augmentative Communication. This is a way for Makenzie to talk using computers and switches. She did GREAT!!! It is a quite complicated system as there are many different kinds of talkers (special assistive computers) and different ways you can place the switches based on what part of the body is the most easily controlled with the least amount of effort.
Makenzie uses her left arm/hand the best. So the therapist set up the talker to say things like "my name is Makenzie", "I love my mommy", "I like to swing and slide"and,"I have 3 brothers,Zach, Josh and Kaleb". Then she put the switch in fron tof Makenzie and set it to auditory scan. Each phrase had a picture and the computer said each phrase, paused and then moved on to the next phrase. The therapist asked Makenzie to push the switch when she heard something she liked. We we got huge smiles and button pushing! She showed us over and over what she liked the best! It was great!!
Then she set up a computer and put in software with songs on it. I picked out 3 that I thought Makenzie would like. She set it up similar to the talker. It said the title of the song and then moved on to the next. When the switch was pushed it would play the song. Makenzie's choices were " Five little monkeys jumping on the bed, " Old Mac Donald had a farm", and the "ABC song". She listened to the choices an then promptly picked the Monkey song. After the song was over it started the choices again. Well my little stinker waited for the monkey song over and over! We listened to it 6 times! The other cool thing is that Makenzie also used her own voice several times while doing this actir to understand launguage and begin to make more of her own words! WOW!
There is so much more about this that is SOOO great! I just don't know how to put it into words! I have been in tears (of joy) on and off all day! After 2 years of not being able to know fully what Makenzie wants, today for the first time she got to choose.... and she did! Monkeys, Monkeys, and MORE MONKEYS!!!!!! To see that was something I just can't even begin to put into words!!!!
I knew that Makenzie was smart but she really blew me away today!! Auditory Scanning is a difficult skill even for a normal child her age and Makenzie picked it up in about 5 min!!! I can't wait to get this therapy started!!! To do this Makenzie will need a talker (insurance will pay for). The talker will take a bit of time as we will need to weed through all of the many different ones out there. She will need a couple different types of switches, and she will need her own laptop! Yes you read that right... my not even 4 year old needs her own laptop! She is going high tec!!! LOL!
God gives us just what we need when we need it! I started to get mad at myself today for not persuing this before but God quickly talked me down and reminded me that His timing is always perfect! Eight months ago when we lost our speech therapist, Makenzie would not have been ready and we may have just written it off as just one more thing that we tried. WOW!!!!
God is here! God is walking with us! God knows what we need! Please keep praying! Believe.. Prayer Works!!! Thank You and God Bless!!!
Sunday, April 12, 2009
We had a great day today! It started of course with the Easter Bunny! Then we headed off to church for a very crowded but awesome service! Off to Easter Dinner with the family and then home to take baths pick up a bit and off to bed! Busy!
Makenzie is doing great! She seems to be completly over the croup or whatever it was! Yeah God!
We went to the playland on Friday after therapy and had a blast! Makenzie walked (with my help) up all of the stairs to the slide 2 times and was ready for round number 3 but her mommy was too tired! I was great! She smiled and laughed all the while!
She has been making some new noises and sometimes her cry sounds a bit different. She is growing up! Healing! Changing! It is so much fun!
Today befor bed we were playing on the couch. I laid Makenzie on the edge with her feet hanging of of the edge and told her to get down.
She scooted down and put her feet on the floor. Then she got her hands up and pushed while her head slowly came up as well! She stood there for maybe 20 secs befor she tipped over and I helped her sit onto the floor. She was so proud!
We have officially started Makenzie's Fundraiser for stem cell therapy! We are getting so excited!! July seems to be coming up so fast! For more information on this effort please visit:
The letter explaining our trip is on the right side under "My Medical Needs" click on Umbilical Cord Stem Cell Therapy.
Thank you so much for all of your thoughts and prayers! They mean so much to us! Please keep praying! Prayer Works!!!
Wednesday, April 8, 2009
Makenzie is doing MUCH better! Still a bit boggery but no more coughing attacks! Yeah God!! She did really good in therapy today! I watched a friends 2 year old and she was a great motivator for her! The shook rattles together,bounched on the ball, and gave eachother high fivess! It was so cute!!! Any one out there that has a 2 year old I could borrow (hehe) every once in a while just let me know! Makenzie loved having another little girl around today!
We also had a chance to catch up with a good friend this afternoon! It was great! There are so many people that we have met along this journey! So many new people who really do care! So many people that are supporting us everyday! For that... new or old .... I want to say thank you! God is so good!
I hope to send kenzie back to school tomorrow! I am a bit nervous as she is still a bit emotional. It was so cute today.. when I walked out of the room my friends little girl would get upset and without fail within 20 sec Makenzie would follow suit! Loud noises seem to be bothering her a bit more then usual. This is normal when she isn't feeling great. Well, we all know how quiet a preschool class room is NOT! We will se how therapy goes in the morning and go from there! I would be nice as it has been over 2 weeks since I have been kidless!
Other then that we are dong well! We are getting very excited for this summer and the hope that it brings! Through Gad all things are possible! It makes me somewhat exhausted to think about it as it will be CRAZY!!! We will get through!
Makenzie's Blogspot looks great! I am still working on some of the links explaining her equipment and services so bear with me! I went back and re-read some of then and there are typos..oops... sorry! One day I will fix it!! Just not today!! LOL! It is a lot! Putting it all in writting has proven to take a long time! It was good for me though! Mommies Therapy! If you get a chance check it out at:
Thanks for checking in on us! Keep praying! God is mighty and we are patiently waiting! ASK< ASK, ASK, ASK! Believe! Thanks and God Bless Pam
Sunday, April 5, 2009
When it rains it pours! Makenzie has croup!She has had it for about 3 days and today we spent 6 hours in the ER today! She had a chest x-ray that came back clear! Yeah God!!! She is however kinda low with O2 saturation. Still ok but low for her. They sent us home with some oxygen for tonight as this usally gets worse at night. However Makenzie wil have NOTHING to do with the nasal canula on her face!!! Screaming, tears falling ,coughing, puking, snot EVERYwhere! The second I conceded it was over! She was fine! Hmmmm? Crazy Girl! I love her so much!!!!
Kaleb has cold induced asthma. he has been coughing so we started him on oral steriods amd his inhaler! Yippy it never ends! Pray that this doesn't get worse!