Thursday, February 28, 2008

Human Services Meeting

Well God provided yet again! We met with the Social Worker this afternoon. It was short and sweet with no pointed questions! She was very nice and understanding. She had spoke with Makenzie's pediatritian on Tuesday and he had NO concerns. We knew that already. Her Pediatritian has been great through out this Journey! They have always been available to talk, to fit Makenzie or the boys into the schedule, and now advacating for not only Makenzie but our whole family. We even have our own nurse at their office..... well 2 nurses! I love them so much! We have been going to them since Zach was born ten and a half years ago! Thank you thank you thank you Dr Adam, Dr. Joe, Dr. Ashley, Dee Dee, TyAmber, and the whole staff!

The Social Worker is going to look through her Medical Records and said she would call me back in a couple of days. She said as long as she didn't find anything concerning (which she won't) that all of this will be dropped. Thank You Jesus!

I still don't think I can go back to Children's but I will be praying for an answer to that one. Makenzie really needs that Hospital and some of the very specialized Doctors there. We will try to meet her needs elsewhere but if we can't God will protect us! Makenzie's needs come first before my pride, fear, or anger! Please keep praying for my little girl! I am emotionaly exhausted! Tommorrow is a new day! It will be a good one!

Wednesday, February 27, 2008

Hospital Stay

Sorry it has been so long! On Thursday Maknzie's tube site was very, very sore. I took her to the ER on the advise or the GI doctor. We sat there for 5 hours and they looked at it, told me it was not infected, and told us to go home. So at 12:30am we arived home and Makenzie was in more pain then ever. I called the special care Clinic and a Doctor was to call me back..... Never happened. We headed to Children's Hospital on Friday morning and went to radiolagy and then to her new doctor in the special care clinic. Everythimg looked great with the GJ tube. Her doctor and I talked for a bit and decided that because she had lost a bit of weight and was in so much pain that it would be a good idea to admit her and get a consult with GI to find out what was going on. If not I woulf have towait 4 weeks to get an appointment with GI. So that is what I did. We were ther from Friday untill Tuesday afternoon and would have to say it was the worst thing I have ever been through other than Makenzie's accident on March 25th.

When we got there on Friday the doctor came in and asked a bunch of questions. He then proceeded to try to put Makenzie on 3 new medications. The answer to all was NO! I told him that I never gave her anything new with out researching the drug and macking an informed decision. He asked me why I felt like I needed to do this and told him that She was MY daughter and that I didn't trust doctors. I don't and that is my right!!!!! They have given me more than enough reasons over the last year and that is just the way I feel! I could go on for hours with all the reasons why but I won't!

We had many nurse problems and strong disagreements with the doctors about what had now turned into a "failure to thrive" case. Duh ya think! After what Makenzie has been through mmmmm? They did a bunch of testing and the only thing they came up with was something with her bicarbs, and of course they wanted to medicate! They wanted to start that medication that night and again I told them no.... I needed to research it and would not start a new medication at night!

On Monday the GI doctors came up and said that they were very pleased that Makenzie was tolerating her feeds and was not concerned about her daily weight gain. They then proceeded to sine off on that part of her care saying that she was doing well! When the doctors did their "rounds" I asked them if we could go home and they told me that the protacol for "failure to thrive was to keep the child for at leat 3 days after they started to tolarate the feeds. This was never the concern in the first place!!!! My concern was always the pain and the stomache acids and education from the GI aboout what to expect with the new GJ tube because they didn't give me any information on this when we had it placed! So we stayed. Or shall we say they held us hostage!

Tuesday rolled aroud and I started to loose it. Well I started to loose is on Monday but now I am ready to go postal! The doctors came up and told us that we could go home and then about 10 min later the hospital social worker came up with a Arapahoe county social worker! The doctors had reported concern! I am jumping for joy because my little peanut has gained some weight and relived that they had found nothing wrong with any of her organs that would be causing her to to not be gaining weight! All the while they are on the phone with human services. They said that it raised concern that she was gainning weight in the hospital but not at home!!!! Did they bother to talk to anyone that had known Makenzie for more than 3 DAYS! This is a major slap in my face! I have done nothing but breath Makenzie for the last 11 months. I have given up everything to put all of my time into her rehabilitaion and the boys! This has been a 26 hour a day job! Every profesional outside of this doctor has said that they can't believe this!

I asked for help! See if I make that mistake again! It has been 11 months and we are still struggling with the same issue! the GJ tube is working GREAT! No puke! So now I get to please Arapahoe county! I have nothing to hide! They are just wasting their time and all of YOUR money on this! Children's has dropped the ball on my daughter more times than I can count! I have been in that place over and over to no avail! No one has helped! I am very sad that I found a great doctor that I won't be able to use any more! I will not have one more shred of documantation on Makenzie recorded in that place!

Matthew 7:1-6 says it best:

1"Do not judge, or you too will be judged. 2For in the same way you judge others, you will be judged, and with the measure you use, it will be measured to you.

3"Why do you look at the speck of sawdust in your brother's eye and pay no attention to the plank in your own eye? 4How can you say to your brother, 'Let me take the speck out of your eye,' when all the time there is a plank in your own eye? 5You hypocrite, first take the plank out of your own eye, and then you will see clearly to remove the speck from your brother's eye. (Thank You Lindsey!)

Satan can attack me all he wants through these doctors! I will not back down! I will not be afraid! They will not strong arm me into doing something that I don't believe to be in my daughters best intrest! I love my kids with everything that I am!!!! They will see that! They will hear that!!! They will never forget that when this is all said and done!!! BRING IT ALL ON!!!! WE ARE READY!!!

Please pray for us! Most importantly keep praying for Makenzie! She is doing so well!

Wednesday, February 20, 2008

Pump Trouble

Today was a good day. Makenzie did well in therapy. When her OT came she did some stretches with her mouth and then they sat and played back and forth. She but her sock over her eyes to see if she would move her head or bring her hands up to push it away. She did both! When her therapist asked if she wanted the sock on her nose again she YELLED at her. It was so funny! It was a definite additude!!! She was telling her NO WAY!!

She was a bit cranky this morning so I gave her some more Motrin. I am not sure what but somthing really seems to be bothering her. I can't decide if if we over stretched a muscle or if it has something to do with her tube site. The site is a bit red and she really complains when you touch it. I am going to try to get her in to the Special Care Clinic tommorrow for her new wonderful doctor to look at it.

Tonight went I went to start her feed ..... her pump (that I have had for a grand total of 6 days) wouldn't work. I called our feeding company and he should be out here with a new one in a couple of hour! I felt so bad because he had to go all of the way back to the warehouse to get it! I love our delivery guy from Option One! He has been so good to us! Option One is a great company! They have put up with a lot from us because of all of Kenzies feeding issues! They have done great with accomadating all of her needs in a very timley fashion! Thank you!!!

Keep praying for Makenzie's healing and restoration! Prayer Works!

Quick Update

Makenzie is doing well! Last night was a little rough as Kenzie did not sleep great! She took a 4 hour nap today and went to sleep at 9 and is sleeping well! I gave her a dose of Motrin befor her nap and bed tonight and she seemed to settle down a bit better. I'm not sure what that means but it seemed to do the trick! The j feedings are still going well! We made it up to 60mls per hour! She got over 1000 total mls yesterday. Her stomach did great but it created a ton of saliva from the extra hydration so we had to back down to 50mls per hour to let her little body adjust! She couldn't handle all of her spit! There is a medication out there to control secretions but I still need to read up on the side effects to determine if we will use it!

She did great in Therapy! Her PT was still overjoyed will the results Kenzie is getting from not having a stomach ache all of the time! She was able to get her in half kneel and all fours with out much complaint from Makenzie! Then she put a rubermaid between her legs with a ball on top and Makenzie pushed the ball off of the tub and was so proud of herself! She was smiling from ear to ear! She was able to do this with both arms! Praise God! It was so GREAT to see her use her little arms to play again! She is no where near normal yet in her arms and hands but with baby steps she is getting there!!!! Thank You all for the prayers! Keep praying! God is so good!

Sunday, February 17, 2008

Picture of Makenzie's New GJ Button

Below is a picture of Makenzie's new button. She has been so happy and much more content the last 3 days! I'm sure you are all tired of hearing it but I am soooo happy and life has been so much less stressful! It is amazing how much time all of her feeding issues took out of the day! Please pray that this will be a long term solution for her until she is able to eat all of her food through her mouth! Once again THANK YOU JESUS!!!!!

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Prayer Works


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As I get up this morning I am so thankful! THANK YOU JESUS! To God be the glory! Makenzie had her 4th night of great sleep! She tolarated 15.5 staight hours of feeds at 50mls an hour! I am going to up it by 5 this afternoon and try 60mls tonight! We are almost there! Life is so much better not having to worry about constant feeding, reflux, and puke! Thank You Jesus!

Saturday, February 16, 2008

I LOVE this New Tube!!

Makenzie is doing well again today! She slept all night. This makes 3 nights in a row! She got up around 9am. She was all smiles and talking! We hing out at home for a while and played. She was amazing! I put her in her walker and she stayed for over 20 min with her head up watching her brothers and the TV! I took her out and layed her on her stomach over her Boppy pillow and she pushed up with her arms and lifted her head all of the way up to follow the boys side to side across the room! After about 5 min she decided that she had enough and brought her knees up. It looked like she was just going to crawl away! She also put her butt up a couple of times. It was really cute as the whole time she was grunting! Tons of work! She is such a fighter!

As for her feeding we are up to 50ml an hour! Ya God! She seemed a little tight around noon so I stopped the feed and vented her stomach. She has been burping but there was still a bit of air in her tummy. As soon as we got the air out she loosened up and went right to sleep for her afternoon nap! I think we are going to stay at 50ml untill tomorrow. She is now at the number of calories she was getting befor the new tube! (850ish) The dietitian would like her to get to 1200 calories per day to see good weight gain! She CAN do it! God provided this and he will lead us all the way to the finish line! Thank you for all of the prayers! Keep thanking God for this new healing! Keep praying for Makenzie!

Friday, February 15, 2008

In Tummy Heaven

THANK YOU JESUS!

Makenzie is doing GREAT today! She slept 13 hours last night and woke up very happy! We had PT at Children's this morning. Her therapy went well. We got her Theratog today so we tried it on and did her therapy session in it. The Theratog is a very tight fitting suit that you can strap different ways to help certian parts of the body fire and gives a ton of deep presure. It is a little big but will fit well when we gain some weight with out new GJ tube!!! I will post some pictures of her in it soon.

We came home from PT at Children's and had PT here at home. Her therapists picked her up and immediatly could tell a difference in Makenzie! She had great back extention and was rotating with wonderful head control! I looked at her PT with a smirk and asked her to try some of the activities that usally always cause her to vomit. She replied with a smile "Are you sure?". Needless to say Makenzie did not throw up or even so much a reflux one time and we tried them all! She didn't complain at all about being on her belly either!

After Makenzie was all tuckered out from working very hard her PT and I talked for a bit. I had expressed to her yesterday that I was so happy we finally had a promising option to help Makenzie gain weight and be more comfy but I was upset that we weren't told about this option 9 months and thousands of dollars later! In conversation today I explained that after my night of reflection last night that I wasn't upset because God is in control and His timing is perfect! The next statement really got me excited! She said to me that maybe it was also God's teaching that was perfect! I hope that many doctors look at this very long and hard struggle that Makenzie has had with her stomach and really learn something! We are going to document this all so that someday it may keep another kiddo from suffering down this same road! God is so good!!! HE IS IN CONTROL!!!

Makenzie is taking a nap and then we have one more therapy today! I can't wait to see her OT's response to Makenzie with out a belly ache! I don't think I have felt this encouraged in a very long time! Her gut problems have honestly been the hardest part of her injury! Please pray that Makenzie will tolerate getting up to 60-70 ml per hour so that she can get enough calories and not be hooked up to her feeding pump ALL day! We are at 40ml per hour now so we are over half way there! The plan is to get to 60ml by tomorrow or Sun at the lastest! Please say a prayer of Thanksgiving today for all of the blessings God has Graced us with in the last few days!

GJ Tube



Happey Valentines Day!!!!!!!!!!!

Makenzie was such a trooper today! We went to Children's Hopital again. We met with a dietitian in the Special Care Clinic to discuss feeding with a GJ tube. We talked about Makenzie's diet restrictions and what the best options are for a formula to get in the calories she needs. We discussed this also with the Doctor and decided to start very slow. We are going to give her Neocate. This is the most hypoalerginic formula on the market. She also sat down and gave me a 7 day feeding plan to get her up to 1200 calories! I am extatic! I have been asking for this for 9 months now! This new doctor in the Special Care Clinic is GREAT!!!! She has listened to me and been very proactive in helping Makenzie! I am very impressed! She has personaly called me back several times in the last 24 hours and done everything she said she would do!!! I am so thankful for this!

Then we headed over to radiolagy and had the GJ Tube placed. Yes, it was that easy!!!!! Makenzie was not very happy with the whole ordeal but it took less than 10 minutes and bam ALL DONE! I think the hardest and most uncomfortable part was getting a 16 french tube in a 14 french hole! The bigger tube fits much better though and is way more snug to her stomach! This also should be more comfortable for her!

We came home and started using her new tube at 3:00pm and upped the speed 2 times! She has done great! We also got a new pump that can be used in any direction. That is nice because her old pump had to be stood straight up and down or it would not run!

I sat down tonight after ALL of the kids were in bed and thought back on the last nine months and the past 24 hours. The end thought was GOD IS SOOO GOOD! It has only taken 28 years, and the near death of my precious baby girl, but I think I finally get it. Well some of it. :) I don't believe any of us will ever fully get it!

Last night I was talking to a freind and stuggling with how to leave Makenzie's feeding issues in Gods hands. In the end as a human I have to make the decision. I started to worry about the GJ Tube and wether or not it was going to work because of the bigger tube and the smaller hole issue. The song with the short phrase.... God is in control popped in my head and I said a short prayer leaving the sucsess of the GJ placement in his hands and let it go. When I got up this morning I sang the little piece of that song and asked God to open doors if this was the right thing to do and then headed off to the hospital. In the last 24 hours i have met the 2 most helpful doctors and everything went so smooth I was able to stop at the store for cold medicine, grab something to eat and still make it home in time to pick the kids up from school at 2:30pm! (my appointment was at 1:00pm!) God provided for Makenzie! God is so GOOD!

Makenzie was also very verbal and happy this afternoon! It was so nice to not have to watch her reflux and puke all day! She seemed much more happy and content! Thank You for all of your thoughts and prayers! GOD IS IN CONTROL! We can prepare the horse for battle but the victory is in GODS hands! Thank You Jesus! Keep praying for Makenzie's continued healing!

Saturday, February 9, 2008

Here I come


Makenzie had a pretty good day today. She has 2 somewhat sleepless nights and short naps. She very cranky this morning. I have been trying some different ways to feed her because she seems to do better when I feed her while she is asleep. Every time I get out the syringe she starts to cry. She knows what I am going to and doesn't like it at ALL. We also added some different formula. I don't know if her belly hurt or if she was just tired from not sleeping well. She is sleeping well now so I pray that she will do better tonight.

She was so cute tonight! Kaleb was being silly and running in and out of our family room. She laughed so hard that she started coughing! She did this for almost 20 min. He changed the game a couple of times. and she was so happy. She was following him back and forth across with her eyes and head just as fast as he was running!

Then she decided that she was in the mood to take a bunch of steps with me holding her she thought that this was also very fun laughing all the way! She has also been looking at toys! She usally likes to hear them but not look at them. I am so proud of her! She is doing so well. Keep up the prayers! God is the most powerful healer!

Friday, February 1, 2008

WEEEEEE

We had a couple therapies today. Makenzie did well. Kaleb had a play at school. It was so cute! I thought that Makenzie would be very tired and cranky afterwords but that was not the case! She was so happy and talkitive!. Her sensory system is getting so much better! She fell asleep at church on Sunday and last night she fell asleep in the chair with the T.V. on. Normally she will not fall asleep if there is any noise AT ALL!!! I posted another video of her laughing. I am so proud of her! She has learned so much this week and we are beginning to see her personality more and more every day! All of these little short videos of just a few sounds and movements may not seem like much but they are huge!!! I have not heard Makenzie's voice for 9 months and even after a week of tons of sound it still makes my heart skip a beat when she talks!!! Thank You all so much for the prayers! Please keep praying for God's grace, healing, and restoration for Makenzie!





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