Friday, April 30, 2010

Green Goulash


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Oh me, oh my.

Yesterday did not even come close in comparison to the number of need to take a deep breath moments of today!

I casually mentioned last night that I was going to try to do some bolus feeds into Makenzie's stomach today. Yeah well casual turned into a real adventure.

Last night I held half of Makenzie's usual night feeds in preparation for our attempt at G tube feeds in the morning. I figured if it didn't go well I would just give what was missed during the day today. I also gave her some extra water to ensure she didn't get dehydrated.

This morning when we got up I fixed Makenzie some breakfast. She is not a big morning eater so I also blended up some food in our wonderful borrowed Vita Mix blender. Thanks Lyn so much!

I sat Makenzie down and fed her what she would eat by mouth, When she was done I attached a bolus tube into the G port of her GJ button and started pushing in the green goulash that I had fixed.


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Just a small side note.... blended rice, apple juice, blueberries, spinach, peanut butter, and olive oil does not look or small very appetizing....I'm just saying!

Makenzie did fabulous! I stopped a 1 ounce in about 5 minutes. This doesn't sound like a whole lot but it is for Makenzie. There was no gag or puke. Just a lot of smiles and giggling!

I tried to take the tube out of her button but could not get it while she was in her chair so I put on a video ran up to get dressed and grabbed her clothes. The time was ticking and we needed to walk out the door for therapy in less then 20 mins. I walked into the room to Makenzie looking at me with the hugest smile. I asked her if she was ready to get out and the smile got bigger. 1,2,3 lift.... POP!!! CRAP! CRAP! CRAP! I forgot about the tube!

I lifted up her shirt to assess the damage and realized immediately that the front of her G port was gone. CRAP, CRAP, CRAP! The button was useless. The only way to fix it would be a trip to the hospital.

Then there was that pause, the cuss words, the deep breath in, and repeat about 10 times! LOL! I wanted to try to feed Makenzie through her tummy but not without the safety and comfort of her J tube... not yet.

I composed myself and felt a quiet, gentle tugging at my heart. I was reminded of some of the events that preceded all of this happening.

1. I have been thinking about trying this for at least 6 months but never had the guts.

2. I had asked Makenzie's feeding therapist if I could borrow her super top of the line blender so I could try blending different stuff for Makenzie to eat. She had just received the blend back from another family she had lent it to just that morning and was getting ready to take it out of her car when I called. hmmmmm.. We also talked about a blended diet and I decided I was going to try it.

3. I researched nutritional guidelines last night and talked in depth with a friend who feeds her son blended food about what has worked for her.

4. I went to the store and bought a ton of food to blend.

5. Most importantly... before I started to push the food this morning I laid my hands on Makenzie and prayed giving the feeding issues to Him. Whether it went well or not it was His. Then her tube comes out. Hmmmmmmm

WOW!!!

I called IR and they told me from their standpoint it wasn't a big deal if I pulled the tube. Putting it back in would not be a problem. The of course told me to call GI which I did and could not get a hold of Makenzie's nurse and the triage nurse was not much help.

I really didn't need their input anyways because I was going to do what I wanted anyways.... LOL!! Not sure why I am surprised that all of my kids are as stubborn as they are! hehehe

So I pulled the tube. Other then a trip to the ER we are out of luck getting it back in until Monday. I took a step of Faith. Peace and fear all at the same time. This has NEVER gone well. NEVER.

Below is a video I made changing while Makenzie's tube this morning. Many people have asked me to explain this type of tube and I thought this would be very informational on both types of tubes. It is not the greatest video but I tried!

WARNING....Some may find video of changing a feeding tube graffic...WARNING


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Makenzie did amazing. I was able to get about 16 oz into her today. We did have one small puke but it started with Makenzie coughing on her spit. Not sure it would have happened otherwise. Makenzie had a BM and has had her medicine and over 8 oz of water through her tube so far since she went to bed with out any issues! I am in awe of God's power!

Who knows if tomorrow will gp better or worse but I am asking that you pray. Pray for no belly aches, no vomit, and better volume tolerance.

I am emotionally exhausted. I trust in God's leading but I am still human. I spent the entire day on and off squeezing a syringe with green goulash in it praying with each squeeze that the food would stay in my precious daughters stomach. That my friends is exhausting but it was oh so worth it! Another glimpse of God... priceless!

Believe...Prayer Works!

Thursday, April 29, 2010

The Rat Race




Sometimes life is overwhelming. sometimes the house is out of control, the kids won't stop fighting, dinner doesn't get made, homework doesn't get don't, an appointment gets forgotten, and the list goes on and on.


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This week has been one of those sometimes moments. Like all week.... yeah fun!

Somehow I make it through, the still small voice calls my name... I am here, I am holding you, you'll make it through this, I am here... every time!

Today Makenzie's therapist showed up late, the house was a mess, Makenzie still needed to eat lunch,and get dressed. I needed to get ready to walk out the door to drop Makenzie off. Then I had 2 hours to get groceries, clean up, make some phone calls, reply to some emails and eat.

At one point I just had to stop and breath. Running late... really really late! 30 mins until school starts. One thing at a time.. breath in.... breath out....

1. Feed Makenzie (not fun in a hurry but she cooperates and eats super well.)

Check

2. Change Makenzie's diaper and get her dressed

Check

3.Do Makenzie's hair

Na.... not today... looks good enough

4. Shoes on

Check

5. Mommy Dressed

Check

6. Load into the car

Check

7. Back into the house to get the talker

Check

8. Leave the driveway 15 mins late

Oooops Check, Check, and Check again!

Now I could breath a bit but still running short on time. Off to do all my errands, go back to pick up Makenzie from school so that I could feed her again, feed the boys, bath, hair, formula, nite nite songs, more clean up, phone calls, tuck the boys in, blog, and bed.

Breath in, Breath out and repeat like 10 times!

The key is... I am still breathing! The kids are in bed and I am on my way there too. Then the rat race begins again in the morning!

On a side note.... I am going hold half of Makenzie's J tube feed tonight and try to bolus G tube feed her tomorrow with some whole blended foods. Please pray that she will tolerate this as it will be a huge step in the right direction to being a complete oral eater! Pray!!!!

Believe... Prayer Works!

"You guide me with your instruction and at the end you will receive me with honor."
(Psalm 73:24, GNT)


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Wednesday, April 28, 2010

A Jaw Dropping Good Time

Standers, walkers, pumps, diapers, formula, doctors, therapists, wheelchairs, talkers, braces, walkers, IEP's and the like.

Special needs. Special kids. Special love.

It is a life that most will never live nor understand. It is a good life. It is a life in which many things that most people take for granted are cherished. It is a life of many frustrations and many victories. It is special. It is my life.


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Today special needs brought therapy. This is the case with most everyday. It is really something that I look forward to. All of Makenzie's therapists are wonderful people and I so enjoy their company. Makenzie loves them and if she could talk I am sure she would tell you how important they are to her.

In PT Makenzie worked on reciprocal weight bearing on the bolster. she did a great job. She did a wonderful job of keeping one foot on the ground while shifting her weight to boom the other foot, using her arm, trunk, and head to help shift the weight. Makenzie also loved having her neck stretched in both PT and OT as well.

Feeding therapy started and ended with a bang. Makenzie showed off all of her new skills! We ate for awhile. Then we tried a bit of water from a cup. She did amazing the first 2 sips but the 3rd proved to give her a little trouble. We will continue practicing with thin liquids!

I then got out a bottle with chocolate milk. Makenzie has been sucking on the bottle for me but I was sure she would not show off but......... suck she did.

There were jaws dropping in my house today! Go Kenz! God is so good!

At the end of the session her therapist said that Makenzie was doing the best she had ever seen! She said that I had very good technique and feed Makenzie beautifully. It is so nice to hear. I am so proud of my girl and so glad that I get to be a part of the unfolding of God's healing power.

She ate again at dinner while watching Play with me Sesame. I took some video so you all can see how well she is doing! It was really funny because she did not want to take her eyes off of her favorite show. So cute. Next time I guess I will have to turn her around or turn the TV off but for today it worked! LOL!!!


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I also got some video of her sucking.


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God is leading those stem cells where they need to go! Keep praying for miracles

Believe... Prayer Works!

Tuesday, April 27, 2010

Makenzie Rocked It Today!

Uneventful is good every once in awhile!

This morning while doing therapy we where hanging out on YouTube....for Makenzie of course... and maybe for a good laugh as well. YouTube is a really good tool we have found to keep Makenzie interested on her belly.

This video has been out for awhile but it get funnier every time I see it.... If you want a good laugh click on the link below....

Unicorn After Wisdom Teeth

Yeah I know that has nothing to do with Makenzie, my boys, or me for that matter but we had such a good laugh I had to share it!

So that led to more YouTube surfing after the therapists had gone. Makenzie loves the random videos. Her favorite are of people falling or laughing. We watched some pretty funny stuff including, Charlie bit my finger - again ... way funny, David after the Dentist and Kid Saying Fire Truck....I love how cute kids can be when they pronounce things so wrong, if you can't imagine what the child could be saying instead of fire truck and you have children around maybe save this link for another time.

So what can I say... it is cheap entertainment! LOL!

Makenzie has been eating really well again. So well that I had to give her medicine to herl her go to the bathroom. Good Job Kenzie.

The eating issue is going to be the end of me. She does do well and then she wants nothing to do with it, She can eat. Her oral motor skills have gotten so much better. She is closing her mouth and lips wonderfully. She is keeping her tongue in her mouth most of the time and she now shows a huge interest in food. At this point I believe when she is not interested in eating some of it is a behavior issue. Eating is fun for a little bit and then it becomes work and who wants to work when they are 4 years old?

Some other stuff that could be causing the disinterest is the lack of sensation in regards to feeling full or hungry. Makenzie has now been tube feed for 3 years and 2 of them have been J tube which bypasses her stomach. From what common since tells me being fed that way would take away the ability to feel this.

A while back we worked with a GI doctor in LA who gave us some good ideas on how to help Makenzie get more food back into her stomach and help her learn the full and hungry sensations again. I have some great idea to work with unfortunately this Doctor has since passed away and so the quest begins again for another GI doc that specializes in tube weaning!

The other option is to take Makenzie to a very successful intensive feeding clinic. Or course this would once again be in another sate for a prolonged period of time. So with that said we are going to work VERY hard this year on eating and next summer if need be I will arrange a trip with ALL of my kids to this clinic.

I know she can do this all of the time.... not just in spurts. Please pray for continued success! She gets better at eating everyday now we just need her to eat enough to get that tube out!!! Pray!

After school Makenzie had speech therapy. To sum it up, as her therapist was leaving she looked at me and said..."Makenzie ROCKED it today!"

This speech therapy session was amazing! Makenzie is communicating in ways I had no idea she could. She is asking for help, switching screens to tell us what she wants, stringing words together, and she even got impatient with us jabber mouths and told us "Play" when we didn't notice that she had picked a number on her game and wanted her therapist to make it go! AMAZING!

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart." (Jeremiah 29:11-13, NIV)

God has BIG plans for Makenzie! Keep Praying!

Believe... Prayer Works!

Monday, April 26, 2010

A Life Worth Saving!



First, thank you for all of the prayers! All is well and nothing it was!

So with that said we move on! LOL!

On Tuesday my oldest cultured positive for Step throat. This morning I decided to take Makenzie in to the doctor to have her cultured as well. When I called the nurse this morning to tell them I wanted to come in of course she asked me what was going on. My answer... nothing really... I just have a feeling that Makenzie has strep.

Other then the fact that Makenzie was a bit more drooley then usual she really had no other symptoms. Happy and laughing .... not sick but I still had a sneaky suspicion!

Once again my amazing doctor's office accommodated my not sick child. When we got there she was smiling and giggling and no one believed me. Well I didn't believe me either... LOL! They swabbed her anyways because they are wonderful and have stopped asking questions! LOL!!

As we sat waiting for the results of the quick strep test Makenzie continued to giggle and smile. I heard the beep on the test and then I heard a ...."it's positive!" It was almost 12pm and we were the only ones in the office so I stood up, peeked out the door and shouted.... "I told you so!" LOL!!!

There really was no need for a "I told you so" because not one time did anyone give me a hard time. They know when it comes to my kids I am usually right. Not all of the time but usually. So nice to know they trust my mommy gut.

While the doctor and I were talking she asked if I had talked to one of the other doctors in the last week. Yes, I had, but only about my sons illness. She then told me the couple who had administered CPR to Makenzie, on site during her accident, had called their office to ask how she was doing!

I have never met these people. A couple who was waiting for a table outside of a near by restaurant. A couple who just happened to be each be medical professionals. A couple who heard our cries for help and came to my daughters rescue. The couple who along with several others saved my daughters life!

All of this to me is hear say. I didn't see them, I didn't hear them, I know at some point someone gave me their contact information but in all of the chaos that was my life at the time I do not know where it went.


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This Life Was Worth Saving! Thank You!
I am waiting to hear from the doctor who took the call and find out if he took down the couples information. I want them to meet Makenzie. I want to meet them and tell them thank you....I would love to think of something better to give them for what they did....not only did they save my daughters life on March 25th 2007 but 3 years later they still think about Makenzie... however there is nothing more I can do but tell them thank you. AMAZING!! So.... THANK YOU!!! Please pray there is a number out there. Pray we will soon be able to meet face to face. I am ready for that now. Pray!

After leaving the doctor's office we stopped by Target to get Makenzie's RX and did some looking around while we waited. We went straight to the toy section because Makenzie LOVES to look at toys. Such a wonderful feeling! She used her arms VERY well in playing with some new toys.

We came home and I decided to try to give her the ABX in her mouth instead of hooking her up to the tube. She did GREAT! Along with the medicine she had some yogurt and played at the table again with her toys.


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Today was a really good day. Even though Makenzie is "sick" she was so happy and did some really cool things. Thank you again for your thoughts and prayers!

Believe... Prayer Works!

Sunday, April 25, 2010

Please Pray!!!!!

Tonight I can not post.

Well kinda.....

I ask for prayers for one of the people that is closest to me.

A person that I love dearly.

Something is not right and I am scared.

I pray that I am wrong and it is nothing.... nothing at all.

Pray with me that it is nothing!

Believe... Prayer Works!

Saturday, April 24, 2010

Happy Mouth!

I have a little girl who for 3 years wanted NOTHING to do with ANYTHING in her mouth. Today I have a girl who wants EVERYTHING in her mouth!

She ate like a champ today. Tonight at bed I put one of my fingers in her mouth and she LOVED it. I decided to get her a pacifier and she giggled and laughed as she chewed, sucked, and spit out the pacifier.

She would spit it out and laugh so hard. If I didn't put it right back in she would wine and root for it like a hungry baby. it was so cute!

I love that she is having fun tasting foods and letting different things in her mouth with out freaking out! HUGE!!!


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"The LORD says, 'I will guide you along the best pathway for your life. I will advise you and watch over you.'" (Psalm 32:8, NLT)

"If you need wisdom - if you want to know what God wants you to do - ask him, and he will gladly tell you. He will not resent your asking. But when you ask him, be sure that you really expect him to answer, for a doubtful mind is as unsettled as a wave of the sea that is driven and tossed by the wind. People like that should not expect to receive anything from the Lord. They can't make up their minds. They waver back and forth in everything they do." (James 1:5-8, NLT)

Dear Father,
We come to you today to once again thank you for all of your promises. We thank you that you have a solution for us no matter what our situation or circumstances. We thank you that it is your desire to lead and guide us through brain injury. We pray today that you would give us your wisdom. And we pray that you would minister to any area of our body, soul, or spirit that does not expect you to answer. We ask that you would deliver us from a doubtful mind that prevents us from moving forward. We have so many decisions to make for Makenzie and we want to do your will. Please help us to overcome anything that prevents us from hearing and obeying your voice.
In Jesus' Name,
Amen.

Friday, April 23, 2010

Silly Party Fun!

I do most things much better under pressure. When my days are crammed full of stuff that HAS to be done I can get more done in 2 hours then in 2 days sometimes!

Today was one of those days. Cram packed full from 7am till 9pm.

It started with a trip to Sonic in the rain/sleet to get my son a lunch for his field trip. Yes I forgot and he didn't remind me until 8pm last night! Ahhhhh!

After getting the boys off to school it was into the bath with Makenzie. Clothes on, hair did, car warmed up, and out the door by 8:45am.

We made plans to go see a friend and her daughter at the hospital for breakfast this morning but first there was a pit stop at the gas station, and to the store to get some balloons.

We got to the hospital and had a really great visit with Samantha, her mom Heather, and Jenny (Cici's mom) and her daughter Penny. I should just re name this blog... I Love My Friends... I feel like I have said that so much lately but it really is one of the most amazing parts of this journey.... other then watching God's healing power in Makenzie and I have been blessed with a lot of great times with many of then lately!.

We left the hospital and headed to Toy's R Me and picked up a few things for my sons birthday... that was today... yeah last minute shopping... LOL! Then to the store to get treats for his class. Off to the school to drop the treats off and home again for speech therapy! Ahhhhhhhhhhhhhhh!

Makenzie did really well but was a bit of a pistol! She made me laugh so hard, She is getting a little 4 year old attitude and was teasing us for the whole hour! Every time we would ask her a question she would giggle and just pound away at her switch. She refused to answer the question and then would just a giggle away... knowing that she was being silly. Here is a snippet of us trying to get her to tell us what she wanted to eat after she told us she was hungry!


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Then I fed Makenzie lunch and we were off to Target to get a few things including wrapping paper.... yes once again WAY last minute! LOL!

We met the kids back at home and the boys watched Makenzie so that I could wrap some presents and then we all cleaned up for the party.

I set Makenzie in her chair at the table and put her piano in front of her. I didn't really expect her to play with it but much to my surprise she DID!!! This is the first time that I have seen her use her hands lifting them up and playing with a toy that is in front of her and while sitting up! Go Makenzie! So proud!


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Party time it was and party we did! So much fun! Where has the time gone! My kids are growing up so fast!! This year my oldest will be 13 (oh boy!) and my baby will be 5!!! Yikes!


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So if you made it to the end of this post you must be as tired as I am! Thanks for hanging in there with us! Life is good and you all help make it that way!

Believe... Prayer Works!

Thursday, April 22, 2010

Wild Happenings


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Wild weather! Really wild weather.

The day started out with rain. After about 10 the sun began to shine. A few hours later it began to POUR and hail and pour some more.

Makenzie and the boys where at school and I happened to be at Target when the fun began. The weather turned even worse fast! Then the tornado warnings began. Makenzie and the rest of the preschool ended up on the floor in the bathroom. The boys ended up in classrooms with no windows under desks with their heads covered. I had the pleasure of being held hostage at Target along with all of the other shoppers and employees, in the back of the store who knows how long! Oh the excitement!

Makenzie had a great day. She did wonderful in therapy doing a lot of weight bearing in sit. She was so loose and her therapist worked a ton on her neck and shoulders. She really enjoyed this and must have thought it felt good.


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School went well.... in the bathroom...hehehehe. She also had a visitor from the Adaptive Tec team. They worked on switch access some more in the new chair the school PT ordered for her. After seeing her in this chair for the first time my original thoughts where confirmed....there is no way this chair is going to work. I think it will be good for a few things so it is not a total bust but for most of the activities Makenzie needs to use the chair for it will not work. So I will be telling the school district " I told you so" very soon! Oh the joys of advocating for your child!

Tonight the boys asked if Makenzie could stay up to eat dinner with us and of course I said yes! I made her a bowl of avocados and we sat down....again...together as a whole family! Such a wonderful feeling that is!

Makenzie ate and ate and ate and ate! WOW! The coolest thing is that she is closing her lips with most every bite. She has not had any type of lip closure....other then her pouty face..... since her accident. This is HUGE!!

Then she pleaded with me for some of my soda. I gave her a sip on her spoon. I then decided to try the sippy cup but she didn't really go for that so I tried it in a bottle. At first she looked a little confused but then she did something I was not expecting at all.... she wrapped her lips around the nipple and sucked on it!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! She scared herself silly when the soda ended up in her mouth but did a great job of swallowing it. WOW!!!!!! Really....that left me speechless! I am so excited!

So again we had an exciting but wonderful day! I am going to close out this day with a new episode of private practice and a glass of wine! Keep Praying! God is listening!

Believe... Prayer Works!!!

Wednesday, April 21, 2010

Seating, Feeding, and Throat Culturing!

Another day of blessings! Another day of love and community! Another day to remember how many people are standing behind this family and princess Makenzie!

Today started with 2 really great hours of therapy. Makenzie was so loose and looks great!

I took Makenzie to school and as soon as I left the preschool I got a call from the middle school asking me to pick up my son because he wasn't feeling well. I picked him up and called the doctor. They thought he should be seen as his symptoms sounded a bit like strep throat.

SO it was back to the preschool to pick up Makenzie and off to the doctor's office we went. I just love the people at this office. I have been taking my kids there for 12 years! They started caring for each of my children when they were each hours old. During the last 3 years they have bent over backwards to care for my family. They talked to me for hours when Makenzie was in the hospital on their personal cell phones. They have no problem picking up the phone for any questions or concerns I have at any hour of the day or night. They fit us into the schedule no matter how busy they are. They fill out any paperwork I need for any of my kids with in hours of the request. They ALL are AMAZING! Priceless! Thank you Pediatric Pathways!

Then it was home for a snack and a meeting with our seating specialist. While we where in Costa Rica Makenzie was able to sit in her friend Gracie's chair and she LOVED it! We have been on the hunt for a new chair for a while and I think we may have found a winner.

TD came and looked at the info I had printed out on the chair and measured Makenzie to see what size would suit her best. We talked for a bit and decided that we would order this chair for a 30 day trial and then decide if it would work for Makenzie.

Needless to say we should have the chair in about 10 days! Once again AMAZING! This company has also bent over backwards to help Makenzie. We have NEVER gone without the equipment that Makenzie needs!

We also started the process to make an appointment with a seating clinic that works with Aspen seating to get Makenzie a wheelchair that will be fitted specially to Makenzie and will offer her the most optimal support. This is one of the best seating clinics in the nation and I feel so blessed to have them in my own back yard! We are so close to getting Makenzie the seating system that will really fit ALL ....ok maybe not all.... I am not sure that is entirely possible....of Makenzie's needs when it comes to support and positioning! YEAH!!! So excited! So Blessed!

We were not done yet! Makenzie's feeding therapist showed up at dinner time with KFC for the whole family! WOW!!! We ALL sat down and ate dinner together! Makenzie did REALLY well and ate a little bit of everything! She is closing her lips SO well! We talked for a long time about many things but one of the big things was the prospect of trying vital stem with Makenzie. This is a technique that Makenzie's feeding therapist is trained in and could help Makenzie with swallowing, sucking, and stamina just to name a few of the benefits.

It was a great time and again for the 100th time or so today I was reminded how blessed we are! Today was a great, great, great, great, great, great, day!

I once again thank you all for EVERYTHING!

Believe... Prayer Works!!!!

Tuesday, April 20, 2010

Support

Life is back in full swing!

I miss my friends dearly. Of course I still have the phone and the Internet but there is something much different about being physically together. Support is an amazing thing! All of us come from different types of homes, have different cultures, parenting styles, do different therapies, have different problems, our children are all different but yet we are so much alike! There is no judgement, no explaining, and no justifying anything. It is just comfortable. We are able to give each other good ideas and talk about what has and hasn't helped our kids. Although I wouldn't wish this "club" on anyone I love to meet new people...the people I call friends!

Makenzie had a really good day! She had PT and OT this morning and her therapists where very excited to see her!

On OT Makenzie did very well on the ball. She did some good rolling and even grabbed several times for the bar on her wall latter. She got a good hold on it one time and was so proud!

In PT she work on getting to side sit and pushing through her arms. Makenzie really seemed to get the concept and tried so hard! While in side sit she reached for a toy with one hand while weight bearing on the other hand! Her therapist was only giving her 2 fingers on her shoulder for support! WOW! Go Makenzie!!!!

It is way to early to really say that the stems cells are working but Makenzie's body feels very different to me! Her arms are moving a ton more and she is trying to point to things a ton.

We were looking at a magazine that has adapted toys in it and 3 times she reached up and pointed to a toy... and even cooler it was a toy that I know she would love!

I picked a couple toys from the magazine that I am going to order for her. She just loves to play but doesn't yet have any adapted toys that she can make work by herself other then her airplane. It is amazing to look at toys and know what my little girl LIKES!!! That is a true miracle! She LIKES things! Think about that! I just LOVE that thought!

Thank you for all of the SUPPORT! It means the world to me! Each and every single one of you are priceless! Keep praying for miracles!

Believe.... Prayer Works!

Monday, April 19, 2010

Walk by Faith!



Walking by Faith is really hard sometimes! I heard this song on the radio today and it was so fitting!

There are many things that I can not see but I have faith that God is in control of. God has a plan and the last 3 years are proof of that!

Continue to pray for miracles! Pray that the new cells in Makenzie's body will bring healing and glory to the all powerful Healer!

After 3 years of craziness I am feeling God's leading to slow down. Summer is coming and there is so many fun things that we can do. I looked at the parks and rec book tonight and hope to sign the boys up for some really fun activities and take some good time to re prioritize what is most important in this life. We only get one chance!

Believe...Prayer Works!

Costa Rica.... Round 2

Costa Rica Here We Come 4-9-2010


We made it to Costa Rica!

Both flights went very well.

We got to Dallas about 3:00pm and met up with Julie and Joey for some lunch and soon after Gracie, Jennifer, and Scott made it and we were onto another plane for the long leg of our flight.

All 3 of the kids did amazing and immigration and customs was a breeze!

I had no choice but to start Makenzie's feeds on the plane which I have never done before and she did GREAT! No reflux or vomiting. Amazing! The last time we were here Makenzie puke not 5 minutes after starting her feed and we had to run water for the whole night! It just amazes me how such seemingly simple things can make life sooooo much easier!

When we got into SJO, ICM was ready and waiting. We loaded up into the vans and headed to the hotel. There was some confusion with the reservations but we are all safe, sound, the kids are in bed and I am headed there very soon!

Thanks you for all of your thoughts and prayers! God is so good. Keep praying!

We will have a couple of days to hang out before our first appointment on Monday at 10am with the doctors and then it will be time for the dreaded IV placement! Please keep praying for peace and for a smooth procedure!

Believe... Prayer works!


Lazy Days in Paradise 4-10-2010

Who said therapy trips can't be fun?





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Today Makenzie and I slept in a bit. We had breakfast and then took a bath/shower...there is no tub. It was so nice to just be able to take our time and get done whenever we got done with no impending appointments or other life events.

Around 12ish we decided to take a walk up to Subway to get sandwiches. Other then the language barrier and forgetting to convert our American Dollar to Costa Rican Colones it went great!

We adventured over to the park across the street and found a playground with swings, slides, and even a teeter totter. All of the kids had a great time with lots of smiles and laughs!












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We explored the park a bit more before heading back to the hotel to get ready for our venture to the grocery store.

I did not go to the store last time we came to Costa Rica but to me it looked like a small town grocery with everything in Spanish. We did not find one person in that store who could speak English so we did the best we could. Did you know, apparently Costa Rican's do not eat apple sauce. Yeah... they had no clue what we were talking about, even with the help of our driver who spoke very broken English and a jar of baby food apples in hand.

When we got back we hung out for a while letting the kids have a snack. Makenzie ate a bunch of yogurt. I am wondering if a feeding group would be good for her because when other kids are eating she eats so much better then when it is just her and I.

Then we headed to the restaurant at the hotel next door and had a very nice dinner topped off with chocolate cake, ice cream, a wedding reception, and a mariachi band. Makenzie and Gracie loved it but Joey was not too sure about the whole ordeal.












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Makenzie went right to sleep after dinner and now Julie and I are hanging out playing FB games and blogging! LOL!!!

Tomorrow we are going to try to go to the butterfly garden and maybe out to lunch before our therapy starts on Monday. Pray for safety and good times! We are really having a blast even though there is not much to do. It is so nice to be with such close friends!

I will post Makenzie's schedule for her appointments tomorrow so you can pray for us at those times!

Please also pray for Joey and Gracie! They are amazing!












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Gracie












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Joey

I guess it is back to another game of Farkle... or maybe bejeweled!

Believe... Prayer Works!


Butterfly Garden.4-11-2010















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Our last day of rest and relaxation has come to an end. Tomorrow we will start stem cell therapy and ABM. However we had a great day and even did some site seeing.



Early this morning Tayna, our ABM practitioner got in and we enjoyed some breakfast together. Her flight also went very well other then the few that thought a red eye flight should be talked through instead of slept through.



After a bit of hanging out we decided to take a trip out to lunch and to the Butterfly Garden. The food was great and the butterflies were once again beautiful!






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Makenzie loved it when they would fly by her face. She just giggled and giggled! We looked at the beautiful flowers and saw some frogs and turtles as well.








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This evening we hung out all together just enjoying each others company. We got Farkle lessons from Scott and watched the kids play together. They are all so amazing!








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Gracie trying to give Joey a kiss!



Tomorrow we go in for our first appointment at ICM to ask any questions we may have and then it is off to CIMA (the hospital) at 12pm for the catheter placement, Please pray all goes well and that God's peace will cover me because with out that I am going to be a wreck! After tomorrow is over I will feel so much better!








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God is so good! Please continue to Believe....Prayer works!
 
 
 


Costa Rican IV 4-12-2010

Worry.... I am a pro at that.




Makenzie decided that 2am would be a good time to get up this morning. She was very fussy and wanted nothing to do with staying in bed. After about 10 min of trying to get her back to sleep I realized that it was a lost cause.



I decided to get the computer and turn on a movie for her and it worked. She settled down and watched and I went back to sleep. A while later she began to cry again and when I opened my eyes I realized that it was because the computer had died,



I shut the computer and rolled her over and she went back to sleep until about 8am this morning.



I gave Makenzie her last shower for the next 5 days and did her hair. SO stinking cute!














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Another family flew in last and we got the pleasure of meeting them and there beautiful son Brock! We hung out by the pool and talked until shortly before 10am and we all headed to ICM for our first appointment with the doctors.










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Me and Makenzie and Brock and his Mommy!



At this appointment we talked about the many improvements that we have seen in Makenzie. The doctor also noticed some of the same major changes we have seen over the last 9 months.










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We also talked about the IV placement and my concerns. She told me that most of the time they did not allow parents in the OR but have had a few over the years and that we would talk to the anesthesiologist about it.



Worry.... I have been worrying about this day for the last 3 months. I almost didn't book this trip because of this day. The last go around with her being put under was not great and I was terrified but God had something he needed me to learn. TRUST.



We got to the hospital and waited for the anesthesiologist who was running late. He had NO problems with me going back with Makenzie. They wheeled both of us on the gurney in our blue smurf suits to the OR. They let me hold her and the mask so that Makenzie wouldn't be scared. She did great! We sang and rocked and before I knew it she was limp....oh what a wonderful feeling.... and out like a light!










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At this point I thought they would escort me out FOR THE procedure but they didn't. I wasn't sure if this was good or bad.... for me that is! LOL



After I laid her down on the table her oxygen started to drop, her hate rate began to rise, and her chest was rising and falling very strange. This is when I started to FREAK OUT! They told me it was ok and that she was just fighting the drugs. I remembered in that moment who I could trust. I looked at the monitor, turned around, started to pray, and her oxygen level went back up and her heart rate when back down.



I paced the room trying not to look. Trying not to worry, Praying for peace. They blew 3 veins and wanted to try to put the IV in her neck. NO WAY. So they tried her other arm and it worked! They stitched it to her and wrapped it up. I picked her up and crawled back onto the gurney, They rolled us into the PACU where the screaming began!








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Makenzie waking up after her IV










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This time it was still hard but bearable. I knew she would stop. There was only one small gag with a little bit of spit up. We went into the other room where Joey, Gracie, and Brock were waiting for there turn. She stopped and started a couple of times and then it was done. YEAH!



Makenzie has been in a great mood ever since!



I love this girl so much! I miss my boys SO much! I know they are being well taken care of!



Tomorrow Makenzie will receive her first 2 vials of stem cells at 1:30pm. Now that today is over I am SUPER excited!!!



Please pray for ALL of these cells to go EXACTLY where they need to go!



We are ending our night outside with a few drinks under the Costa Rican moon. We are having a GREAT time!










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Gracie and mommy hanging out by the pool playing on the computer.



Believe....Prayer Works!
 
 
 
Healing 4-13-2010
 
Healing.... lots and lots of healing.







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Makenzie's boo boo.

When we came to Costa Rica 9 months ago. It was hard, stressful, and a bit scary! Back then Makenzie was still vomiting, waking in the night, not eating, choking a lot on her own saliva.

This trip every time I turn around i am reminded of how much better Makenzie is truly doing. This trip has been a walk in the park so far even with the events of the IV placement. Makenzie is love being with her friends and has been so happy. She does so much better with change and has been great with everything we have thrown her way.

I am amazed. It is like we never left but this time I can breath! I love it!

Today we started the day with ABM. Makenzie did really well.

We hung out at the pool for a while, I fed Makenzie at the hotel and then everyone headed down the street for some grown up lunch. We ordered some guacamole and Makenzie LOVE it! She took bite after bite just a smiling away.






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After lunch we went straight to ICM for our first round of Stem cells. There is not much too it but it is still somewhat of an ordeal because Princess Makenzie is a DRAMA queen. The second we started to take the gauze off of her arm the tears came. They stopped here and there but not for long. When all was done I looked at Makenzie and told her that I would stand up and go when she stopped crying. It took about 2 seconds to dry her tears and we were off! What a little faker!

This also was so different then last time. Yes she cried but there was not fear of nor any vomiting. She has healed so much.... did I mention that already? LOL






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When we arrived back at the hotel we camped out at the swimming pool for some drinks and social time. Over 3 hours of social time. Makenzie started to fuss at about 6:30pm so I decided to take her in and put her too bed. Ah yea....she was not going to have anything to do with that idea. The second I hit the door to the room she started crying. I laid her down ti put on her pj's and the alligator tears started flowing. I asked her if she wanted to go back out side and she smiled and then proceeded to cry. I told her that I would take her back outside if she stopped and immediately she was done.






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We went back out and she was happy as a clam. Our little party dispersed about 6:30pm and then it was really off to bed for Makenzie.






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Makenzie and Gracie outside watching Barney together!

She is sound asleep. As soon as I can refill her food bag I will be right there with her! Thank you for all of the thoughts and prayers! Round 2 is tomorrow at 1:30pm! Please pray for God to guide these cells and bring Makenzie healing!

Believe... Prayer Works


Home Sick on Day 6 4-14-2010







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Costa Rica is a beautiful place. There are so many wonderfully caring people here. Many amazing sites to see. However, on day 6 I am starting to get a bit homesick.

We have eaten at all of the restaurants in this area. The food is ok. We went to Burger King today and although it looks just like BK with a play place and all it was a far cry taste wise to the way it is at home. Everything here has a strange texture. The milk is gross and the sour cream is runny. The bread is dry, and even the name brand things we bought from the market still tasted weird.

I have only found two TV stations that broadcast in English and tonight the Internet has been really slow! I am feeling a bit isolated and tired. I miss my boys like crazy, I want to talk to my friends, and sleep in my bed with no one bothering us 2 floors up!

With that said we really did have a great day. It looked much like yesterday. ABM, lunch, stem cells, drinks and laughter by the pool, and now waiting for Makenzie's feed so that I can refill it and head to bed.






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Makenzie hanging out with Tayna doing ABM.

Makenzie has been eating like a CHAMP! After squawking while watching Joey drink some water out of a water bottle I gave in and let her try a little. She LOVED it! She has not yet been cleared for thin liquids on a swallow study but she did very well with it!






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Tomorrow we go in for Makenzie's 3rd stem cell injection at 1:30pm again. Please pray for healing, health and safety!






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More fun by the pool.
 
 
Great Time! 4-15-2010
 
Boy was it ever hot and muggy today in Costa Rica!







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Makenzie and Joey flirting with each other.

Makenzie is doing so well. She was pretty flexed today but I am hoping that once the IV comes out tomorrow morning she will be more comfortable.






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My new favorite food is avocados! Makenzie LOVES them... which makes them my best friend! This afternoon when she was eating she was closing her lips all of the way to move the food down her throat. I personally have never seen her do that before. Go Makenzie. She loves eating with her friends and I really think that it gives her so much motivation.

We did a lot of hanging out again. Had lunch, went to ICM for Makenzie's 3rd round of injections, and then got a tour of the lab. The lab is just amazing! They answered more questions I am sure I have already asked a million times and explained the step by step process. Just amazing!






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Joey in one of his many crazy t-shirts.

We had a really nice steak dinner tonight. It was a bitter sweet dinner being that it happened because Lisa, Al, and Brock will be leaving first thing in the morning. Good byes are always hard. I hope it was not good bye but more like see ya later.... maybe at Wal Mart in the Deli...on the east side...ok that was an inside joke but there are a few who are laughing really hard right now!....sorry if you are not one of them! I just could help it! LOL






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One last group picture.

Please keep praying! We go in for our final stem cell injection tomorrow at 10:30am. After the cells are in and the line is flushed the IV will be coming OUT! YEA!!!!

Tomorrow we are hoping to get out and do a little something before we leave. I am not sure what we are going to do as of yet but I am sure it will be a good time!

Please pray!

Believe...Prayer Works!



ALL DONE! 4-16-2010

Our last day is Costa Rica was great! This trip was amazing. Makenzie did better then I could have ever wished for! She slept well and was in good spirits the entire week!











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Makenzie and Joey both dressed in crazy t-shirts that read "Forget the College fund, start saving for my THERAPY"

Today we started out with ABM. Makenzie did very well holding her shaker and trying to bring it to her mouth while Tayna worked with her lower body. The idea was to get Makenzie to separate her arms from her legs and man did she perform. She was so happy and a lot less flexed!






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Then it was time for the last injection of stem cells. Once again Makenzie was none too happy about the affair. It only got worse when they started to take the IV catheter out. They started by taking the tagaderm off of her skin....oh boy! She held her breath once for a good long while, causing her whole face to turn blue, so we stopped and let her catch her breath but........there was no vomit! AMAZING! When all was said and done I am sure she is happy to have that thing out of her arm. There was a pretty nasty mark under where the catheter sat as well and seems a bit sore and bothersome still.






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Makenzie before they started messing with her.






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And during/after






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Poor Girl!

Then it was Joey's turn. He had his IV in the foot and because he moves his legs so much they put a short blue cast on him to keep him from kicking the IV out. Well there was no cast saw at the clinic so we took another scenic drive back to the hospital ER to get it taken off.






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The ICM doctor met us there, we walked right into the ER. Makenzie and I waited outside and they just went back cut it off and where done. Julie and I laughed because there is NO way that would happen in the states! It would be like taking your family doctor to the ER asking to use their equipment and then taking off! Ha... yeah right!






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The view from the hospital.






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Then it was out to lunch, more ABM, a bit of hanging out, and then to dinner....lol! I feel like all we have done for the last week is eat and sleep!

We are all packed up and ready to head to the airport first thing in the morning! I can't wait to get home to see my boys!! As always the see ya laters will be hard. Please pray for safe travels!



Home Again! 4-17-2010

WE ARE HOME!


Today went so well! Makenzie was such a good traveler! I did not hear one peep from her on either flight and she even let me take a little nap which made the flight go by much faster!









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We left the hotel this morning at 7am. What a sight to see. 6 suit cases, 3 wheel chairs, 2 car seats, backpacks, purses, 3 kids, 4 adults, 1 van. I should have taken a picture of that one!

We got right in to pay our taxes so that we could leave the country... yes... airport tax...you don't pay....you don't leave! When we got up to the counter to check in the attendant was looking a bit frazzled. They had our plane load from the tarmac... no jet bridge. She was trying to arrange a bus to get us to the plane. As she checked us all in she jabbered on the phone with ... well ...who know trying to figure it all out. In the end they where able to change the gate and get a jet bridge.... all for us! WOW!!

We loaded the plane early as they were trying to push us off the gate and the bridge to make room for another plane. It was raining but that didn't slow us down at all. Makenzie was an angel the whole flight. They served breakfast and man where those the best pancakes even. Ok maybe not but after a week of strange tasting food they where!






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We arrived in Dallas almost and hour early. This was good and bad because I was going to meet a friend for a bit and with all of the time changing, customs, and security we did not cross paths! I am soooooo SORRY Jon!






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Makenzie loved the Skylink!

We had lunch and then said our see ya laters and each headed to our gates to depart to all different parts of the country again! Sad!

Our second leg was much shorter and also went very well! Makenzie loves take off and landing! She also loves to look out the window! She was so alert all day and following directions so well!

After retrieving our bags we headed to the car... loaded it up, stopped by my grandparents house to get the boys and for a quick bite to eat and then headed home!

Makenzie was SO excited to see the boys! She did not stop giggling until she closed her eyes around 8:30pm to go to sleep!

My eyes are very heavy right now after a 13 hour day of traveling. I want to say a HUGE THANK YOU for all of the prayers! This trip was amazing and will not soon be forgotten! Please keep praying for the new stem cells to bring much healing to Makenzie, Joey, Brock, and Gracie!

Believe...Prayer Works!



What a Trip.... but it Feels Good to be Home!



Rest, relaxation, American food, a soft bed, English TV, DVR, telephone, a fast Internet connection, a bath tub, and washing machine, are just a few things I am super grateful for after being in a different country for a week.

I decided to sleep in a bit this morning and it felt oh so good! My own bed, real food, and my boys!

We ended up going out to lunch with grandma and a few friends and that was great! Home is so nice!

Makenzie rolled around some today which was really great to see because she hasn't done that for a while. She was loose and not as flexed and as always super happy!

The boys are so glad to have Makenzie home and fought over her for a lot of the day.

Tomorrow it is back to school and therapy!

Pray for Miracle's!

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