Saturday, April 30, 2011

365

I am so proud of this girl!


I am normally not a person who anticipates a date but  I have been excitedly waiting for today to come for weeks. 365 days ago I broke Makenzie's last J tube button while taking her out of her wheelchair. 365 days ago Makenzie began to eat through a G tube again for the first time in two years. 365 days ago most of her doctors believed we would be back into the Interventional Radiology department sooner then later for a new J tube placement. 365 days ago my God and Princess Makenzie had different plans.

As many of you know feeding Makenzie has been one of the most difficult parts of her recovery. From April of 2007 until February 2008, Makenzie spent most of her day puking any food I put into her. She did not gain any weight in those nine months and was considered Failure to Thrive (FTT). So in February 2008 we decided to bi pass her stomach and go straight into her intestine using a GJ tube. Makenzie was fed this way for over two years and began to gain weight. In fact at times she gained too much weight.

However, there were many downsides to feeding Makenzie through a J tube. The first was the amount of time it took to get all of her calories in. In the beginning it took 20 hours a day leaving her only four hours off the pump to have therapy. Lugging that pump and tubing around all day was not fun. The second was the amount of radiation and anesthesia Makenzie was exposed to in order to thread the line into the right place every 3 months. Also not fun nor healthy.  

(if you have no clue what a g tube or a j tube is you are not alone! Check out the video I put in this post 365 days ago to help explain the differences)

365 days ago Makenzie and I set out to show the world again that miracles do happen.

The day when I put the G tube back in and let food enter Makenzie's little stomach for the first time in 2 years, I had no clue what I was in for. I had no clue I would be accused of not feeding my child right. I had no clue I would be asked to question my ability to know what was right for my daughter. I had no clue what it would be like to be told I was exploiting or hurting the little girl I had been fighting so hard for with every single breath for almost 3 years. I had no clue how many tears I would shed.

You see though, I guess that makes this day even more sweet! Today marks one whole year Makenzie has been G tube fed. In this year  Makenzie has gained weight on a blended whole food diet, learned how to control her gagging, is fed three times a day for a total of 3 hours instead of 20, she has not been exposed to any radiation, she had a complete blood panel drawn which showed no nutrient deficiencies, and has not had any constipation issues!

 Makenzie still has reflux but it is under control. Meals are now just that ...... meals. They are not puke feasts or panic attacks. Making her formula is now a science and it feels so good to know Makenzie's body is being nourished by real food.

This has been quite a journey. I am sure there will be more bumps but I am saying goodbye to FTT and adios to a life that revolves around a feeding tube.  God is soooooo good! What a miracle!

Happy 365 day anniversary baby girl!

Believe.... Prayer Works!

Thursday, April 28, 2011

I See

Do you see what I see?

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A beautiful laundry room

and............

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A walk in closet........

and............

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Wider door ways................


Yeah, I see those things too. 

More importantly I see so much love going into this project from my family and community. From the bottom of my heart......THANK YOU for helping us make this house a home!

Believe.... Prayer Works!

Tuesday, April 26, 2011

Extreme Home Makeover



I have so much to share. Today was a day of very intense emotions. Today we started our own mini Extreme Makeover minus tearing the whole house down! I shed many tears thinking about how much love was going into our new home. We have been so blessed and when/if I get the OK to share the details of how this was all possible I will rush to my keyboard!

Today, we ripped out the wall in the hallway. I say that like I had something to do with it...... um not some much!

The carpet got ripped out through out the house, My mom and grandma scrubbed the kitchen, bathroom, and got the laundry room ready to paint.

Both of my uncles came over and spec ed out where we were going to put a closet in a room that was an office but is soon to be a bedroom and got a really nice looking shelf complete with bead board and hooks put up in the downstairs hallway to make up for the coat closet we lost in the hall widening.

Mr. 13 also spent the day educating himself on home improvement and did a stand up job! He learned how to use a power washer on the back deck, along with a power drill, nail gun, and many other odd and end jobs.

Makenzie and I went back and forth between the new house and therapy at our current house. She was such a trooper. A few times the noise of the loud power tools got to her but for the most part she did great!

Tonight before bed I decided to weigh her. I have not done that in a long time but much to my surprise she has gained one pound, two ounces! Go Makenzie! That was just the icing on the cake for today!

Right now I am on cloud nine. I feel much less stressed then I have been feeling and even got a tentative completion date of May 7th!!! God's goodness, and the kindness of others NEVER ceases to amaze me!!!

SO THANK YOU!  Those two words do not even begin to express my gratitude but they are all that I've got!

Believe.... Prayer Works!

Saturday, April 23, 2011

Eggs, Birthday, Fun..... Oh My!

Today was a wonderfully over the top crazy busy but tons of fun kind of day.

We started out taking a drive into the country for a 4H meeting. We got to drive on several county roads many of which were dirt and very bumpy. Makenzie laughed so hard. However as soon as I pulled into the driveway I got an e mail telling me that the meeting had been cancelled! Go figure. SO we turned around and headed back home.

We got home only to find someone showing the house so we went to the store for a few things and made a second drive buy to find the second showing there. By the time we walked through the front door we had been in the car for almost 3 hours! Oh fun!

Seizing a little bit of extra time we colored our Easter Eggs. I set Makenzie up in her chair with her talker so that she could tell me what color she wanted her eggs. It was so cute. She picked green, two orange, and pink. I am pretty sure we got more dye on us then we did on the egg but Makenzie had a great time putting the eggs in the cup and then trying to fish them out.





After we were done with the eggs Makenzie decided it was time to sing. It was Mr 9's 10's birthday today so I asked her if she wanted to sing her big brother Happy Birthday on her talker. She gave a huge smile and went to work finding the song. The next thing we know "Happy Birthday" is playing loud and clear. She giggled and laughed and we all sang along! She was so proud!

Then it was time for pizza, cake, ice cream, friends, and family, to celebrate my amazing son! We had a wonderful time.

Moving right along...... After our little party I took the boys and two of Mr. 10's friends to Jump Street. Oh did they have fun. They jumped and flipped and played many intense games of dodge ball. By the end of the trip they were all red in the face and worn out!




They had an area for little people there as well so Makenzie and I took our shoes off and did a little jumping, sliding, and bouncing around too. Makenzie loved sliding down the edge of the tramp, and she sat up straight and tall for a good long while watching all of the other kids come and go! It was a great time shared by all!


So needless to say I am tired! Very tired! Tomorrow is Easter! I am so Glad that we can spend the day with family thinking about what Jesus did and thanking Him for loving us that much!

I am going to head to bed early tonight so that I can enjoy the day with a little extra rest and hopefully energy!!

Believe... Prayer Works!

Wednesday, April 20, 2011

A Toast.....

I am so tired. I am waiting a few minutes to dose Makenzie's last medicine and then I am going to bed.

Makenzie has been super refluxy the last  three days. I am pretty sure it is from drainage from her cold last week but I am praying that it gets better soon! Please pray with me!

Other then that Makenzie has been doing good. She had a great time swinging today during therapy. I took this picture with my phone. She looked like such a big girl!

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Here's to a less stressful, less exhausting, less refluxy day tomorrow.......

Cheers

Believe.... Prayer Works!

Tuesday, April 19, 2011

Fever Free Packing Frenzy

I wanted to to sit down tonight and write a post about so many things but the evening has slipped away.

Makenzie is feeling better and has been fever free since Sunday morning. Thank you for all of your thoughts and prayers!

We are gearing up to start getting our new home ready to move into. All of the bids for initial modifications are in and we are praying that God will provide all of the means to be able to give Makenzie everything she needs to become more independent in her home.

Today I began the packing process which was a bit bitter sweet. It is hard to leave a home that holds so many memories but exciting to know that a new home will finally meet the needs of ALL the members of this family! I am excited! Having a home that works for wheelchairs, walkers, all of the other crazy equipment, and a growing girl,  has been one of my biggest worries when it comes to Makenzie getting older. Feeling the weight of all the worry and stress lift off my shoulders is amazing!

In 2 weeks I will no longer have to worry about how I am going to get Makenzie up and down the stairs. In two weeks there will not be stairs in the way of her moving from room to room. In two weeks (after everything is put away) I will breath a sigh of relief because an enormous weight that has hung over much of Makenzie's healing and many of my thoughts about the future and final acceptance of what happened 4 years ago will be gone!

God is oh so good!

Believe... Prayer Works!

Saturday, April 16, 2011

Relaxing Weekend Getaway...... Or Not!

What was supposed to be a wonderful weekend in the mountains with therapists and other wonderful parents, learning how to better help Makenzie and myself use her talker, turned into Makenzie spiking a fever of 102.5 and us heading home less then 24 hours after we got there.

I don't do well when Makenzie is sick. Multiply not well by 300 times when I am not in the comfort and safety of home, a long way away from my trusted team of doctors, The Children's Hospital, and it is the middle of the night. Not Good.

Then add onto that how much work it was to get my family up there, how upset my kids were to miss out on zip lining, horseback riding and many other fun activities, getting to know other parents who understood and expressed having many of the same issues I am having with Augmentative communication, and time missed being able to just talk, and laugh with people who understand....... I drove down the mountain pretty bitter, in tears trying not to loose it so I could see where I was driving. I NEEDED this weekend for many reasons but it was just not in the cards.

When we got home I dosed Makenzie up with Mortin and Musinex and laid down on the couch with her. I knew Makenzie was really sick when she fell asleep on the couch with the boys milling about and the TV on. She slept there for almost 3 hours and when she woke up her fever was sky high again. I called her doctor and made the decision to wait until this morning to take her in.

She was very restless last night and was so grateful to be at home. We moved back and forth from the bed to the couch most of the night and much to my dismay again this morning her fever was sitting at almost 102 degrees. So my mom came and got the boys and Makenzie and I headed into the doctors office.

Makenzie may be sick but she is such a trooper! There is no Strep or Flu. She is presenting classic signs of a respiratory virus BUT.... her lungs are completely clear!!!!!!!!!!!!!!!!!! I am so relieved and thankful that God has given Makenzie the strength to protect her airway and clear her secretions. God is so good!

Makenzie is just about done with lunch.... the first meal she has had since Thursday night. She seems to be tolerating it just fine.... knock on wood. She still has fever reducers on board but seems to be feeling a bit better. I am still upset and wish I was enjoying a weekend away from real life. There will be another camp in the fall and I hope we can make it to that one with out any issues but for today I am going to cuddle my baby girl and do whatever it takes to help her feel better!

Believe... Prayer Works!

Tuesday, April 12, 2011

Modifications

Well it is all coming together. In 10 days we will take possession of our new home.

We met today with Makenzie's PT and a contractor to discuss what needed to be done before we laid the floors and the house was ready for us to move in. It looks like we may be widening hallways, doorways, angling a wall, and removing part of a wall before we paint, have the floors installed and then move in. We talked about ramps as well and also have a great plan for the bathrooms after Makenzie gets on the CES waiver and the funding for modifications comes in.

This has been a huge eye opener when it comes to what it takes to modify a home to grant a person with different abilities access to every part of their home. There are so many little details I would never have even thought up. I am so very grateful to have such a great team of therapists and carpenters who have so much experience with all of this stuff. With out my outstanding support system none of this would have ever been possible! So if that includes you... THANK YOU!

I am starting to get really excited. The house is mostly empty and today for the first time I could really see the space for what it is. It is now time to start picking out paint and organizing a painting party! Oh so much fun! Oh so much work, but oh so worth all of it!

All of this is going to be put on hold however until next week because Makenzie, the boys, and I are all going to camp on Thursday! Makenzie's Speech therapist is helping run an augmentative communication camp through, The Children's Hospital, Easter Seals, and Scottish Rite, and we got accepted to attend! I am exited but a bit apprehensive. I am not a camper. We will be in cabins with beds but I really love my bed and the comforts of home!

Regardless we are going because I know it will be fun! There will be cool consulars, other siblings who have a brother or sister with special needs, tons of activities, and other wonderful super parent to meet! So I am going to throw my worries to the wind and have a great time!!

I have a ton to do to get ready. I have yet to figure out how I am going to get everything in my van but I am sure I will figure it out. I was thinking about tying a couple of the kids to the roof of the van so we would have  more room for the walker wheelchair, linens, feeding equipment, aug comm stuff, and all of clothes both winter and summer. All joking aside I have yet to figure out how I am going to get four days worth off stuff up to this camp but I am sure I will get it figured out even if we look like a scene from National Lampoon's Vacation!

Everyone on my house is quite and I think I may even get to head to bed a bit early tonight! Yippy!

Believe... Prayer Works!

Friday, April 8, 2011

Walker Wonder

Well I think for the most part we are all at the tail end of this lovely cold that has been passing through our home.


After I posted last time about Makenzie feeling better she decided to make a liar out of me by having a full fledged coughing fit.It was a  Barky, croupy, breath stealing cough. I yanked her out of bed and we went straight into the bathroom and turned on the hot water while I called the doctor. As we sat in our steam bath Makenzie's cough lessened and loosened up. Then we headed outside and hung out on the porch all wrapped up in a blanket.


The doctor called back and Erica headed out to pick up an oral steroid for Miss Makenzie. I debated whether or not Makenzie needed it and whether or not it was worth weakening her immune system in a house full of sick people. She was not wheezing and her cough had completely stopped so I decided to not give it to her unless the cough came back but it felt good to just have it in case. I never ended up needing to give it to her and she has not had anymore attacks like that sense.



Makenzie has also been doing super in therapy these days! Her PT came a couple of days ago and decided to try to adjust Makenzie's walker into a full upright position instead of leaning forward to see how she would do. She seemed to be pushing really hard that day to figure out how to get Makenzie to the next step in her walker. I had no idea why she was so adamant about trying this but today I found out and am so excited! However it is still a surprise to many people so I will have to tell you why this is so important and exciting another day!


Back the the upright position in the walker...... Makenzie ROCKED it! This is so so good because it now means that she is getting much better weight through her hips! She is also taking much better, stronger steps. This is huge! I am so proud of her!! Seeing her straight upright and moving still makes my heart skip a beat with every step!


There is so much going on around here! So much more to say but for tonight I am going to ignore the mess in my kitchen and head to bed! I think, as long as everyone cooperates, I may just be able to sleep in tomorrow morning! Yippy!!!!

Believe... Prayer Works!!!

Tuesday, April 5, 2011

A Little of This... and.... A Little of That!

Wow! The last few days have been a flurry of craziness!!!

This weekend alone we had 8 showing on the house, a 4H meeting that we got all ready to go to only to find it had been cancelled, a birthday party for my grandma, congestion galore, and more that I just can't remember.

This week we managed to survive the first 2 days of seventh grade at home! We really have had a ton of fun and Mr 13 has done a GREAT job. I am in love with the curriculum that I chose because it is very well organized right out of the box, and there is a little bit of Jesus sprinkled into every single subject.

I have already learned a ton about where the gaps are in the public education my son has received and let me just tell you that if you child is being subjected to the Everyday Math curriculum and his/her school you are in for some fun math catch up at about the sixth grade!

Today we sat at the table and Mr. 13  showed me how he was taught long multiplication after getting nearly all of the answers wrong on his assignment. WOW...... that is really all I have to say about that! SO I showed him how I learned the same skill and then had him try some of the problems again. Low and behold he got them all right! Hmmmmmm.

Also during the last discussion I had with the principal several weeks ago he told me how much extra support my son needed in the class room to stay on task everyday. I was sad to hear such a thing but didn't know that I really believed he really did or if it was just because of the bad social and educational environment he was being taught in. Sure enough, Mr 13 has been Mr. Get it All Done with out much prompting at all. He got up this morning and had already started history before I even crawled out of bed! How's that for needing all that extra support the school claims he needed! Whatever, really at this point it would be hard to get me to believe anything they had to say about any of my kids.

Makenzie is doing so much better today! She fought congestion all weekend. It was constant gagging, coughing, suctioning, and medicine for my princess! Yesterday I called her doctor and asked for some Antibiotics to clear her sinus's. I hate to give her ABX for a runny nose but once her nose stops running and the congestion just sits in her nose and throat it is so miserable for her. I have no clue why it works because I do not believe she has a sinus infection but it does and that is all that matters!

After 2 doses of ABX she has been booger free! She is still coughing but it is not wet, does not cause her to gag, and she did not need her nose sucked at all today!!! Yeah!!! I am so dang happy the snot is gone!

Makenzie is also getting very quick at getting off of the couch. TO the point where leaving her there unattended is not a good idea anymore. She is able to roll to the edge even if I put her at the very back. I am so proud of my girl!

Also in the busyness of this weekend we found out that we will most likely be moving 30 days before we planned on moving. We have appointments set up for flooring and HVAC contractors to come out to the new house this week to give us bids to have new hardwood put down and an AC unit put in. I have begun the thought process on how I am going to pack and move all of our stuff. The reality that the craziness of moving is about to begin has officially set in!!!

So with all of that being said I want to let all of Makenzie's prayer warriors know that we are still here. I am so busy right now and as much as I love to write here between all of Makenzie regular scheduled madness, homeschooling two kids, showing the house, and moving, I will not be able to keep this blog up on a daily basis for a while. I hope you all will understand and continue to pray for Makenzie because your thoughts and prayers mean the world to this family!

This new chapter in our lives is and will continue to be amazing! God is so good!!!

Believe.... Prayer Works!!!

Saturday, April 2, 2011

Feeling Much Better

I just wanted to write a quick post to tell everyone that Makenzie is feeling much better. She is still a bit congested but back to her normal spunk and attitude.

We had three showings today so we headed out to lunch and to the mall. Makenzie got a new visor to keep the sun out of her eyes after she gagged and spit up the second the sun found her eyes. She also got some new hair pretties because well..... mommy could resist.

Tomorrow we have 4 showings scheduled starting at 9am. I am so stinking tired! I know that God has the right buyer at just the right time. I am not stressed about that part of all of this at all but the cleaning and leaving the house for hours at a time sometimes with little to no notice in the middle of feeding and therapy times is getting old fast.

We also have a 4H meeting to head to in the afternoon and a birthday party for my wonderful grandma in the evening. Please pray for a good nights rest and a second wind because I am feeling so worn down!

So with that said I get to go tidy up and then I am off to bed....... I hope! 

Believe... Prayer Works!

Friday, April 1, 2011

Happiness is.....

Happiness is.......Knowing that no amount of medicine can make my baby feel as good as my arms when she are sick.

Happiness is..... Holding my girl in my arms all night just so she can get some rest.

Happiness is..... Being able to understand what my child needs even though she can not actually tell me.

Happiness is.... Taking Makenzie to the doctor just to be on the safe side and getting confirmation that even though she has a TON of congestion her lungs sound perfect!

Happiness is..... Feeling the deep rooted fear caused by so many medical issues which are slowly fleeting, slip farther and farther away from my heart.

Happiness is..... spending the day hanging out on the couch with my girl who doesn't feel very good but still giggles and laughs.

Happiness is.... knowing that even though the sick bug has come to visit, Makenzie will still tolerate her food and water.

Happiness is..... the sound of a strong cough, gag, and swallow which keeps infection far away. All of which many thought Makenzie would never have again.

Happiness is..... being able to spread the administration of medication doses farther and father apart.

Happiness is..... watching Makenzie perk up even if it just so happened to be at bed time!

I am so proud of my girl. She has come so far. A cold like this used to send me into panic mode and usually to the ER. It used to mean vomit, dehydration, and sinus issues with every bout of any kind of cold. Not anymore! God's healing has not gone unnoticed. Even when Makenzie is not feeling well and her body is tired Miracles are still abundantly clear!

Believe... Prayer Works!

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