What a great evening!
The Halloween fun always starts with getting ready! As the boys have gotten older this daunting task has gotten a lot easier. However, mommy had this wonderful idea to hot roll Makenzie's hair so that she would fit the part of her costume. Really it was a ton of fun and Makenzie only got fed up with my antics a couple of times.
What a beautiful little girl! After the rollers where out I took Makenzie to the mirror to show her how beautiful she was and the size of her grin was unmeasurable. She loves being a little girl!
With all of the kids dressed I think we were now ready to hit the road!
So just before dark we headed out to beg for candy. LOL! Most years there is snow on the ground but tonight it was a very pleasant evening. Makenzie loved watching the boys run up and down the walkways and giggled every time she heard the uproar of the trick-or-treats.
My boys are not easily scared but let me tell one of our neighbors got them this year. I so wish I had a video! As the boys walked up to the house they hit about the garage before the chain saw reved up. I had one certain little 11 year old almost in my arms.....mind you I was standing across the street at the moment! I laughed so hard. Not much gets that kid but man was he scared!
After the sun went down the temperature dropped and it was time to bundle Miss Makenzie up. Now she was the cutest little snow bunny you had ever seen! Two costumes... one night! LOL
The boys got tons of candy! The end of the road was Makenzie's PT's home. This is now the 3rd year we have trick-or-treated up to her house. We sat and visited while the boys organized and traded their candy! They now have 3 days to eat it before it becomes MINE! The countdown is on....3,2,1 .... they had better save me some Snickers!
The best part was, after the boys had put away their candy, Makenzie had finished her dinner, and a cup of tea had warmed my soul, we got a ride home!
Goodbye Halloween 2010.... see ya again next year!
Believe... Prayer Works!
Sunday, October 31, 2010
Makenzie woke up this morning with a full blown cold. No fever but she did have a runny nose, puffy eyes, a bit of a cough, and the need to be held..... all day! So that is just what we did. We watched movies with the boys while cuddling on the couch. Even though she was not feeling the best Makenzie continued to smile and laugh.
After lunch I took Makenzie up to bed thinking she would take a nap. She was sick and all. Well, I took a nap while Makenzie talked, kicked wiggled until she was kicking me in the chest and face. I put her back on her pillow several times and each time some how she managed to lad her little toes right between my ribs! So mommy conceded.
She did pretty well the rest of the evening and is sleeping well. I hate it when my kids are sick but I sure do love the cuddling that I get to do when it does happen.
After Makenzie was tucked in bed tonight I sat down at my computer, put some music on, and continued my quest in teaching myself computer language. I am going to figure out how to use html and css if it kills me! I am sure some of you more computer savey people are rolling on the floor laughing at me but I am getting there. Whether or not I will ever arrive is yet to be seen! LOL
So before I throw my computer out the window I am going to call it a night!
Believe... Prayer Works and Miracle Happen!
Friday, October 29, 2010
And please don't come back any other day!!!
Sneeze, sneeze, sneeze, sneeze..................................
We have had a lot of that around here today. Makenzie has a tell tale sign of a cold coming on...... a lot of sneezing. It usually starts in the morning and by the afternoon has continued accompanied by a bit of congestion. Then by the evening has turned into full fledged pouring out of the nose and making it hard to breath kind of fun. Today was that day. It marks the beginning of cold and flu season at this house.... darn it.
Makenzie was still happy all day but did seem a bit uncomfortable this evening as she was drifting off to sleep. She seems to be sleeping quite lightly and she stirs at every little noise. I guess it will be off to the doctor in the morning for the start of the glorious attempts to catch the "flu" before it becomes too late for medicine. Sigh...................
I did manage to make it out to run a few errands this afternoon. One of which was to get Makenzie's prescriptions. When I got up to the counter the pharmacists informs me that a medicine Makenzie has been taking now for 3 years now has a generic form and that is what they filled because insurance would not cover the brand name anymore. I shook my head.... not going to work. I have enough reflux problems and what she is taking works..... no changes...... not happening. So I will have to go back again tomorrow after getting the doctor to write a new script that states no generic. Oh joy!
I also was able to speak to Makenzie;s rehab doctor this afternoon. I had left her a message to discuss the FUNDO with me. We had a great talk. She asked me to schedule an appointment with a surgeon who "hates" the FUNDO. A surgeon that has been trying a new procedure without many of the potential side effects of the FUNDO and with great success. I will be setting up that appointment on Monday. We talked about school and the "truancy letter". She told me that they would take care of that issue with the school. She agreed with me that they were not medically capable of caring for Makenzie with out a skilled aide and with respiratory season upon us it would be a great idea to keep Makenzie home. We laughed about some of my recent adventures and she told me to write a book.....Yeah well, tah dah..... here it is.
Tomorrow will be a day of putting the house back together, finishing a few last Halloween costume details, and hopefully getting over a cold that is not welcome here!
Believe... Prayer Works!
Thursday, October 28, 2010
Did you know that it is entirely possible to ruin a 13 year old's morning by eating his 6 inch Subway sandwich? Yeah well it is.
I ate it last night. I was starving and had no idea it was his. This afternoon he came looking for it but it was gone. I offered him a different one but that was a no go. I offered him something else... nope that was not going to work either and off he went stomping up the stairs to bug his brothers. I was accused of not having any food.... yeah well any that he liked that is.... because it was not HIS left over sandwich..... poor him.
This tirade went on for a good long while. I fed him leftover sloppy joes and he was none too happy about it. He was after all STARVING! I am not sure I am cut out for this teenager stuff but I am on a very fast learning curve.
Remember this 2 hour tantrum started with a missing sandwich..... seriously! Yeah... geez!
The afternoon was salvaged with a trip to grandmas house. We all had a lot of fun carving a pumpkin, making carmel apples... ok truth be told I just ate the carmel..... the boys made the apples, and we all sat down to a wonderful dinner topped off with supper yummy apple crisp. Thank You Mom!
The boys spent the night with grandma and Makenzie and I came home. I laid Makenzie down to bed and spent the next hour playing navigator for Erica. Tomorrow her husband will return from Iraq. She is so excited to see him the moment he gets off the airplane but had no clue how to get to the base. With no Internet I have become the map quest showfer! LOL!
Today was a gift even with the teenage moments. I guess I will get used to it but man it seems like yesterday I was the new mommy to a teeny tiny little baby. Today that baby is all grown up and his brothers are following very quickly behind! Look Out World!
Believe... Prayer Works!
Wednesday, October 27, 2010
I am so sorry for the lack of a post again last night. I was so busy laughing, crying, drinking Margaritas, laughing some more, eating some lava crunch cake, crying, and then falling asleep after an emotionally charged
evening week, curled in a ball on my chair.
This morning my very good friend packed up what was left of her things and loaded her kids and dog into her car and drove off to see a sunset in a different state, and to sleep under a unfamiliar roof. She is on a new journey in her life. One that is a bit scary and full of uncertainty but also a ton of hope!
I am sad. I am very sad. I feel like my heart has been ripped out. I have spent most of today moping around in a state of emotional exhaustion. Erica and I have been through so much together including having the common bond of not only having a child with special needs but also going at it alone.
Erica and I moved past the being friends thing a long time ago and moved onto being family. We know each others imperfections well but we still love each other without conditions. I have known Erica since before Makenzie's accident.... she has walked with me for many miles on my journey of loss, hope, and healing. She is one of the only people I trust to watch Makenzie. She is my rock. I do have several other rocks in my life but none whom I have ever lived close to. I have had many see ya laters in the last 3 years and they were always hard but never this hard because I have have never known them to live right down the street and a day to day part of my family's life.
Erica's children have become a huge part of my life as well! Starting with her oldest Hailey. She fights with the boys like true brothers and sisters do. She is a smart outgoing little girl who has taught me what the norm is for girl children. She has made me do a double take some days and given me a lot to think about when it comes to what I am really missing out on with Makenzie! LOL! Mood swings and attitude..... am I really missing anything!? hehehehehehe!
Miss Emily is a sweet 7 year old little girl who Makenzie has spent the last 3 years being terrified of. Lately however Emily has figured out that she can't just crawl over Makenzie and Makenzie has figured out that Emily can be a lot of fun! They have really had a ton of fun this week! Loving on each other like sisters do!
And then there is Morgan... oh Morgan! That baby has my heart and soul. I never thought it was possible to love some one whom did not come from your body so much, but oh man is it ever! I love that little boy so much. I miss his coos and babbles. I miss getting woken up at 4am and I miss most of all his laughter. I miss him so very much! The sad part is ...... he has not even been gone for 24 hours! I sat with him last night feeding him a bottle. Silent tears streaming down my cheeks. I don't know what I am going to do without his sweat snuggles and cheesy grin!
So yesterday we had a family fun day. We took the kids roller skating.... which by the way we are both paying for today. We left the baby and Emily at home with the nanny so that we could enjoy our time with the big kids. Makenzie thought that skating was great! I strapped skates on her and she giggled so hard. We made it about half way around the rink before my back gave out and Erica retrieved her chair and she loved that just as much! I am pretty sure team Makenzie took first place at speed skating and the dice game .... well we picked the wrong number on the first turn but Makenzie was a good looser!
The kids watched a couple of Halloween movies, we carved pumpkins, ate orange sugar cookies coated with chocolate, made milkshakes, and just plain enjoyed each other.It was a really good day! Really good!
So for today... See ya later.... See ya soon! I love ya girl.... An estimate for the garage door is coming soon! LOL! Oh and by the way even from hundreds of miles away I can still help by directing my friend to her new home, under the same moon, with the phone and a bit of map quest power! Love ya girl!
Believe... Prayer Works!
Monday, October 25, 2010
Today I hit a wall. I had a bit of an emotional break down. Yes, these happen on occasion.
Makenzie has done so well lately with her feedings. I have been vigilant with venting her and there has been no reflux. Today however, after I proclaimed that the problem had been solved Makenzie had a horrible day. No puke but a ton of reflux.
During Makenzie's lunch I was trying to put together a baby swing for my newest baby niece who was born on Thursday, Makenzie had spit up, and her pump would not run and I was having to stop what I was doing every 90 seconds to restart it. At one point I thought if it beeped one more time my head was going to explode!
My friend Erica walked in the room and asked if I needed anything and I looked up at her and said yeah..... I need a kid that is not brain injured that can eat by mouth so that I never have to look at this pump again! As much as I love Makenzie there are those moments when it all just becomes too much. These moments usually last about 60 seconds and then I move on.
The swing was finally put together, Makenzie's feed was over, and move on we did. Makenzie and I sat and read books. We counted all the fish on the pages and then we did a puzzle. She was able to locate the birds on the puzzle by color and take them all out by herself. Talk about proud!
I laid Makenzie down to bed a bit earlier tonight but at 8:30 she was still awake. I got her up out of bed and we just snuggled on the couch. She giggled and looked lovingly into my eyes! I squeezed her and told her about a 100 times how much I loved her! I am only human but man do I love that girl so very much! I love that she wants to cuddle and hug. I love that she loves me even when I do have my moments. I just love her so much!
Tomorrow we are going to take the kids roller skating. This will be the last day I get to spend with my friend before she goes to visit a far away place for longer then I care to talk about so we are GOING to have a good day. I love my friend and her family so much and I feel like my heart is being ripped out right now but God will carry us through this one too!
Believe.... Prayer Works! Miracles Happen!
Sunday, October 24, 2010
Today we played hooky from church to catch up around here.
After having a couple of on the go days the house was looking a bit scary! I got the kitchen cleaned up and the laundry folded.
The boys went across the street for a Halloween party this afternoon. Makenzie and I were supposed to go but I was just too tired and sitting in a quiet house sounded better then hanging out with a bunch of pumpkin covered, over sugared, screaming little kids.
We watched an entire movie from start to finish with out getting off the couch. That never happens! I started to watch the football game but it was just too depressing so it got turned off and Makenzie and I played with books, balls, blocks, and letters instead!
The kids all are on fall break this week. I am so very excited! OK, so now I am just trying to prepare myself with a little enthusiasm.
It's not working!
I love having my kids home. However, the messes they make and the sibling rivalry they are constantly engaged in, gets old after about 13 minutes. Please pray that we can have a good week! Pray that w can find some fun stuff to do! I am hearing there may be a blizzard brewing around here so we may be digging out the sleds!
I am feeling a bit burnt out tonight. I am looking forward to a good nights rest and a fresh start in the morning!
Believe... Prayer Works! Miracles Happen!
Today we celebrated life. Two very anticipated little lives. Baby showers are so much fun. Way to much estrogen in one room, cake, and most importantly presents! My niece and nephew are going to be such a gift!
It was so much fun to sit and talk about what it is life to take care of a baby. To compare stories about labor, sleepless nights, and breastfeeding. To see all the new stuff that has come out in the last 5 years and to oh and awe over how itty bitty the little clothes are! It is even more fun to listen to first time moms talk to each other. I just sat back and smiled.
After thirteen years I can still remember my first and how I felt. I look back and laugh because life was so simple then. Babies are so much easier then back talking, know it all, emotional, and passionate, 13 year old's. 13 year old's are a lot of fun too but much harder as the "problems" become so much more complex then deciding whether to use cloth or disposable diapers,bottle or breast, co sleeping or crib, or if the baby should have a pacifier or not.
I have had babies on my heart and mind for a long time. I have 4 kids and need another like I need a hole in my head but for some reason I feel the urge for another. No one needs to be worried.... LOL.... it is not happening now or in the near... like for at least 10 ish years... but I am hoping one day my home will be a place full of bouncy chairs, swings, rattles, pacifiers, and tethers.
I have heard from other parents who have had their youngest child suffer a serious injury that having another is very therapeutic. Only God's knows if this is the road my life will travel once again some day and I am ok waiting for a good long time to find out the answer!
Before Makenzie's accident we did foster care for a few years. I learned so much of the system during that experience and had no clue one day I would need that very information for my own baby. I look back on that time and realize how good God is and also how perfect his plan for my life is. I have thought about doing foster care again one day and taking in children with special needs. Children that most do not want or don't know how to care for. Children that need a voice and lots of services. I have realized that having a baby someday may not mean "having" a baby.
For tonight and for like the next 10 years I will have to love on my other babies! The ones I get to spoil and love on with out EVER having to be the bad guy! For today that fills the void I feel in my heart!
Believe.... Prayer Works and Miracles Happen!
Friday, October 22, 2010
Last night I sat down on my couch. It was late and my friend was over. I grabbed my laptop to blog and stared at the screen. Nothing came to mind so I put it down.
Today on the other hand was CRAZY! The day started bright and early with breakfast and 3 extra kiddos. My friend Erica had to meet a moving company at her house by 8am so I kept the kids so that she could take care of business without any added stress.
I jumped in the car at about 8:20am with 3 non ambulatory kids and 2 who are way too ambulatory. I stopped by Sonic to pick up lunch for my son who was going on a field trip today, dropped him off at school, and headed to the hospital for speech therapy. Thing is it was not for Makenzie but instead for Erica's daughter. We were running late so I valet parked the van, unloaded 2 strollers and a wheelchair. The look the valet employee gave me was priceless when I started unloading kids.
After we dropped one of at therapy we took a stroll around the hospital looking at all the sites. Took a gander at the gift shop and played with some Sesame Street dolls. It was l bit weird to be there for something that had NOTHING to do with Makenzie. We picked Em up from therapy and headed back downstairs to get some pancakes from the cafeteria. Anytime I have the chance to eat breakfast at the hospital I do because it is so very good.
However nothing in my life is ever that easy. My wallet was in my valet parked van which they so kindly fetched so I could grab my wallet and they could re park my car! Crap! We ordered our pancakes.... 2 chocolate and 1 blueberry, grabbed some juice and headed to a table. Well after waiting for a good long while I asked if the woman taking the orders could check and make sure our food was being made and sure enough it wasn't! I told you nothing is ever simple around here. Needless to say breakfast was free but it sure was good!
The rest of the afternoon went off without a hitch. Makenzie had a great speech session at home and Morgan took a really nice nap. Then the phone rang....it was the school....again...... deep breath in, deep breath out....litterally.
Yes I am going to complain some more so if you want to skip the next 2 paragraphs that is cool.... at this point I am just documenting what is going on for future reference so.......... rant started......
On the other end of the phone was the special education teacher. She was calling to tell me that the meeting time I had suggested for the meeting she wanted to have, but had no clue about 2 days ago according to the principal, and seemed to know perfectly well about today, was not going to work. She suggested doing it in three weeks during conference times so that they could work with Makenzie before they reviewed her IEP and added a few things to the one that is currently in place.. At this point I want to SCREAM because I have made it very clear for starters that Makenzie will not return to school until the IEP is correct and also that I want the whole IEP redone not just reviewed. I am really not sure at this point what to do in order to get them to hear me. Maybe I should try dancing naked while singing my requests to them, I am thinking that may possibly get their attention?
So I once again notified the teacher that Makenzie would not be returning to school until the IEP was fixed and I felt that all aspects of Makenzie's medical care were addressed appropriately. She feels as though it is a catch 22 because how possibly could they make goals for her if they are not working with her. My thought on that one is that they had 8 weeks. Did they not start making these goals already? No they did not! I tried to assit them but they did not hear not one single word that I said and took none of my suggestions and ran with them so I guess she can figure out her own catch 22 problem cause I tried. I told her that before I agreed to any more meetings that I also wanted a detailed agenda of what would be discussed at any meeting for here on, sent to me so that I can run it by my attorney and no more of my time or money is wasted in this process. We shall see what they come up with but it is fall break next week so I am 100% confident I will be left alone for the next 10 days! I am very excited! Rant over..........
Makenzie continues to do WONDERFUL with her feeds! This is the longest stretch we have ever gone with no major problems! I am starting to feel more and more confident that I have found the answer to her reflux. Funny thing is venting was never suggested by any doctor but discovered by me in the shadow of the doctors suggestion to cut her open. I like to start simple before sticking a knife where it doesn't belong and I am so over joyed right now to see Makenzie thriving and happy with so much more physical comfort. We still have a few episodes a day of spit up but it is no more then 2cc's and there have been 0 episodes of coughing, choking, gaging, or puking!!! Go Makenzie and THANK YOU JESUS!
The night ended with my friend watching ALL of my children so that I could run some errands. It is amazing how much you can get done in a short period of time when you don't have to lug in any kids! When I got home Makenzie had taken a bath, her hair had been done, and her dinner was ready to go! I am pretty sure that is the first time I have not had to do the whole bedtime routine with Makenzie and it was a nice, nice break!
I am guessing that tomorrow will be as crazy as today but I welcome it! Thank you for all of the prayers!
Believe.... Prayer Works and Miracles Happen!
Wednesday, October 20, 2010
You know you are a special mom when you smile and laugh as you clean up stomach contents off the ceiling.
Yeah today after I aspirated the air out of Maknzie stomach I was pushing the extra air out of the syringe so I could return the contents back into the stomach. The syringe I was using was old and didn't slid well anymore. I was chatting with the nanny and I could not get the plunger to move. I pushed and pushed and nothing it wouldn't budge. I thought all was a lost cause and just as I had about given up it popped and splattered all over the ceiling. We laughed so hard as I stood on a chair wiping up the mess with a sponge.
To me I find it pretty hilarious that I can laugh about that. I think it is amazing that my kids are so used to all of this weird medical stuff that it doesn't gross them out. I really do love my life stomach acid and all!
Today was another great day! Makenzie and Morgan had a great nights sleep. Morgan woke up one time about 3:30am and slept until about 6:30am. After therapy and a Morgan nap we headed off to Whole
Food's Paycheck to pick up some more meat and grains for Makenzie's formula. On the way home we stopped to visit my sister in law.
In about 12 weeks I am going to be an Aunt to 2 new little baby and my kids are going to have baby cousins. For now my sister in law is on bed rest because of the onset of mild contractions. We had a great visit and I am so excited! Please pray for health for both mommy and babies!
Makenzie only had 2 episodes of reflux ALL day! There has been no coughing, very little gaging, and a very happy and comfortable little girl! I spent the night grilling 9 pounds of ground meat. Tonight I was so happy to do it. Tonight as I cooked her food I knew it was going to nourish Makenzie and not end up on my shoes!
I am sure this post is all over the place. I am sorry. I am so tired. My eyes are heavy. I have so much to say but I can't get it on paper the right way so I am going to call it a night! Thank You all for the prayers. The last 3 days have been HUGE answers to many prayers!
Believe... Prayer Works!
I just tucked Baby Morgan into to bed for his first sleepover without mommy. He is all cuddled up next to Makenzie on his boppy pillow. Makenzie is sharing her princess blanket tonight! I am thinking that Morgan will be receiving his own weighed blanket from
his Aunty Santa Claus for Christmas this year. He sleeps so much better with it on but that doesn't surprise me at all! Until then they both look so peaceful sleeping together under the purple princess's!
So big news around here the last couple of days. I posted here about checking Makenzie's stomach contents to see how much remained at the start of her next feeding. In the process I found a bunch of air. Well the big news is removing that air may be a BIG part of the answer for Makenzie's reflux!
Yesterday Makenzie did not reflux one time! She was so happy and so was mommy! This was first day since Maknzie's accident that she has had no issue's with reflux! I am in awe of God's mighty healing powers! Believe.... Miracle's happen!
Today was not a complete repeat but pretty dang close. I am still trying to get ahold on the timing of taking the air out but it seems like anytime the reflux starts to flare up if you vent Makenzie's stomach the reflux stops. I am on cloud nine right now! It is to early to say if this is the complete answer but I have REALLY enjoyed the last two days!
The other highlight of my day was getting a letter from the school. I was expecting a letter written up from the principal that outlined some of the things we had talked about it. We had discussed the said letter over a week ago and I figured that would be what it was..... nope. It was instead a letter addressing my daughter's "truancy" from school. Seriously? Still wondering where the letter that the principal said her would be sending is? No actually I am not wondering because I am sure it isn't coming. After 7 business days I have given up.
I had not officially withdrawn Makenzie from school yet because I was trying to work things out with the school. I had requested for her IEP to be redone, I contacted 2 of Makenzie's doctors to help me with the health plan, and I had orders changed for her G-tube button in order to have a spare at school. All of those things I felt and still feel are things that need to be addressed for her medical safety before she attends school without me there and I made it very clear to the principal that these things needed to be done before Makenzie would return to school. I am not sure if we can continue to work on these things if I withdraw her from the school but I guess we will find out because it will be happening tomorrow before legal action is taken for the truancy of a child who is not even required to attend school at 5 years old. This is our tax dollars at work people!
I am praying that tomorrow will bring many more good things and Makenzie will continue to do just as well as she has been the last 48 hours with her feeds! I am very excited and feel like we are on the right track.
Also don't forget to enter to win the $100.00 gift certificate from Affordable Weighted Blankets here!
Believe... Prayer Works and Miracles Happen!
Monday, October 18, 2010
After Makenzie's accident I did a lot of research. One of the biggest issues for Makenzie at the time was agitation. This presented itself in the form of non stop crying. It took me up to 2 hours to get her to fall asleep and then most of the time she would wake up within an hour or two and we would start the 2 hour process all over again.
My research was telling me that children who have suffered brain injuries have the need for a lot of deep pressure. So I set off trying to figure out how to give that to Makenzie. My first idea was to lay next to her with my arm and side on top of her thus letting my body weight offer her the needed pressure. It worked. However, I could not lay there with her all the time so my quest continued.
Next I tried putting a phone book on her. This idea came out of desperation for a few minute break while we were in AZ for HBOT. Yeah torture I know. Not for Makenzie she loved it. Sleeping came a bit easier but that sure was not a long term answer.
I was telling Makenzie's PT about my quest for deep pressure to which she offered to Makenzie a weighted blanket. At the time I had no idea what she was talking about but I agreed.
So she ordered Makenzie one from a woman locally who made "weighted blankets" but Makenzie HATED it. It was about the size of a receiving blanket, barely covering Makenzie trunk. It had channels across the blanket which held tubes that were filled with rice. It felt like a brick. There was nothing soft about it and it was very unwashable. So I quickly scratched the "weighted blanket" idea off my list.
I had no idea there were other options and sadly I talked to many others who have also experienced the brick blankie from numerous different companies. I am glad to tell you there are much better options!
After much searching shortly before Christmas 2008 I found a company called Affordable Weighted Blankets. In efforts to make sure I was not buying a brick type blanket again I called and talked to the owner of the company for a long time. She was so kind and helpful. I decided to give the weighted blanket idea another go.
A few weeks later I received a box in the mail. I knew just what was inside. I debated leaving it in the box and putting the box under the Christmas tree but my excitement and curiosity got the best of me.
I ripped open the box and inside I found the softest, most beautiful blanket. Also inside the box were washing instructions and a short didy about the company. As I sat and read, tears started streaming down my face.
The blanket I was holding had been handmade and prayed over. Call me emotional but to me that was just amazing. Whether or not you believe in the power of prayer, the simple fact is, this group of woman cared enough to have the gravity of what Makenzie was going through and the healing she needed on their minds while they together her blanket. That simple gift was very overwhelming for me.
Makenzie loved her blanket and I did too!
The blankets from Affordable Weight Blankets are made out of very durable material. The weight is accomplished evenly through out with poly beads which allows the entire blanket to be machine washed! Now that is my kind of blanket.
Makenzie's blanket went with us to Costa Rica, California, Florida, and Arizona. It supported her in the seat on the airplane. It draped nicely over the wheelchair handlebars to hold luggage. It spent the night on a window seat at the hospital when Kaleb broke his arm. It has been washed many, many times and looks just as beautiful as it did when I ripped open the box. Most importantly though, it helped Makenzie get the first full night of sleep she ever had after her accident. We went NO WHERE with out her blanket!
As Makenzie grew I began to realize that she needed a bigger blanket. So after prying her beloved Strawberry Shortcake blankie out of my hands we donated it to another little girl who needed a good nights sleep!
Strawberry Shortcake was replaced by Disney Princess's and she loves it just as much! It has already been many places with us and I am sure will be going many more!
I tell you all of this because I am super excited to announce a giveaway that will help put a new weighted blanket over another child.
Affordable Weighted Blankets has given Makenzie's Miracle a $100.00 gift certificate to give away to one of you!
Here’s how you can win:
( Make sure you leave a comment FOR EACH THING YOU DO. The winner will be chosen by a random generator based on comment number.)
1. Post Makenzie's Miracle button on your blog.
2. Follow Makenzie's Miracle on here or on Twitter.
3. Visit Affordable Weighted Blankets web site and leave a comment with your favorite fabric option.
4. Like Affordable Weighted Blankets on Facebook.
5. Post Affordable Weighted Blankets blog button on your blog and leave a link to your blog.
Cut and paste the following text into an HTML gadget on your blogger sidebar.
6. Post a link to this giveaway in a blog post, or in a tweet and leave the link here.
7. Visit Affordable Weighted Blankets website and leave a comment naming one of the "disorders" a weighted blanket may be used to help.
I have opened anonymous commenting so everyone is able enter but please be sure to leave your name so I can announce the winner. Comments for this giveaway will be closed on November 15th 2010 and the winner will be announced shortly thereafter.
( I did not get paid for this post other then the gift certificate that I am giving to one of you. This giveaway will end on November 15th 2010. USA only.)
Sunday, October 17, 2010
The boys have been digging to China for years. There is an area in our yard that used to be a garden. I don't garden but..... boys like to dig. So when we moved in I let them go at it! They have had so much fun in that little area of the yard. There have been water fights, mud pies, and lots and lots of digging. Many memories have been made in this little corner of our world!
Makenzie had a good day. I have been thinking a lot about all aspects of the GI system lately. While considering a major surgery I want to make sure I cover all bases. One of those is how fast.... or slow the stomach empties. From what I understand if there is slow gastric emptying there can be major issues with retching after the FUNDO.
So twice today I checked Makenzie's residuals... or in English.... hooking up an empty extension and syringe to pull out remaining contents in the stomach.
The first time was shortly before lunch. I pulled out about 70ccs or formula and a bunch of air. I feel like that is a bit too much but out of the 250cc she received for breakfast it is not horrible. The air also needs to be addressed... maybe in the form of venting. Since I was getting ready to feed Makenzie lunch I decided to discard the contents and start lunch with an empty stomach.
Lunch went with out issue and not one episode of reflux occurred!
When I checked her residuals before dinner I pulled about 30ccs and more air. This time I put the formula back into her stomach and started her dinner. She again did GREAT and is now soundly sleeping.
All of this surgery talk is a lot to think about. I want nothing but the best life has to offer Makenzie. I will continue researching and when I am done I will know that I did all I could to give Makenzie the world!
As for tonight Undercover Boss is calling my name! Below is a sneak peek at what is going to be happening over here tomorrow. You will not want to miss it!
Believe... Prayer Works!
Saturday, October 16, 2010
I went to bed last night with a clean kitchen. This morning Makenzie slept in so I treated myself to a little extra sleep as well. When I can downstairs I found my oldest son in the kitchen making pancakes. I love that he is old enough to do these things and he does a great job. However, in the process the kitchen ends up exploding with dishes, pancake mix, and syrup. I stood in the doorway not knowing whether to laugh or cry!
I spent a good part of the morning talking to another mommy who lives not far from us. We met her family at a park many months ago and I have been friends with her since then. Today was the first time we ever really talked though. I am not sure why but this conversation was LONG overdue. The conversation started with the FUNDO as her son has had the wrap for quite some time now. Then we talked about every thing else. It was great. I hung up the phone feeling understood and I am pretty sure right now in my life that is one of the best feelings I could experience! Thanks Christina!
Today was kind of a laid back day. I had some plans in the works that fell through so we ended up just hanging out. Makenzie has started a new game with me. It is a really cool game. As we laid on the bed this afternoon watching big brother build a house on Sims 3 Makenzie started kick me. Every time her foot hit me I would scream "Ouch' and she would laugh. This is not new but what happened next was amazing. I moved away from her and smiled, looking into her eyes and teasing her with a challenge...I would say.... "ha ha you can't get me! Now what are you going to do?"
Makenzie would laugh even harder. Then she would twist, turn, roll, and kick until she found my body again usually at my feet. Her laughter became uncontrollable as she kicked and wiggled until she was almost kicking my face and had turned almost in a circle. So much fun! I think the best part was knowing that Makenzie understood completely the game we were playing TOGETHER!
It was a good day ending with Burger King cookie dough pie and funnel cake sticks. Ode to the things kids think are good! It made them happy so who cares right?
Believe... Prayer Works!
Friday, October 15, 2010
Fall time has come. Soon it will be time to carve pumpkins and dress in silly clothes with coats, hats, and gloves over top walking around begging for candy. We will rake leaves into big piles only to jump into the pile scattering them again. We will start Christmas shopping and buy wood for the fire place. It is living. It is fun! It is fall!
It is cool in the morning. So cool that sweatshirts and jackets are required. By the afternoon the jacket comes off and a t-shirt goes on. As the sunsets the jackets come back out and the cool returns. This time of the year produces more laundry then one would care to talk about.
Tonight we threw the jackets back on and headed to the elementary school for their annual fall carnival. My oldest decided that he was now official to old for the event and really I don't blame him. We all ate way to much cotton candy and pop corn. My youngest boy child got a wrist full of shaped plastic bracelets, and we won a yummy chocolate cake after ending up on the right number during the cake walk. All in all it was a good time. For ten bucks I really can't complain.
After wards we headed to a friends house for pizza and a movie. It got a bit too late and I had to leave early and get Princess Makenzie into bed. The boys just returned and are all crawling into bed as I type.
It was a long day. I am so very tired. I am ready to crawl under the covers too!
Believe.... Prayer Works!
Thursday, October 14, 2010
About 3 years ago Makenzie was in the midst of a PT session. I was observing while Makenzie bounced on the ball with her therapist. All of the sudden Makenzie let out this loud noise. It was not a cry or a laugh. It was unlike anything I had heard since Makenzie's accident. Both her therapist and I looked at Makenzie and then at each other.
"Did you hear that?" we both exclaimed!
Up until that moment Makenzie was either silent or crying. After that she made the babbling noise a couple more times before her PT left and then again the next day and every day to come. My first thought in the moment was soon Makenzie would turn those sounds into words and before long she would be a little chatter box again. Now, as with so many other things Makenzie, we would just wait for that moment to come.
Three years later I am still waiting. Makenzie babbles all the time with many more sounds. It is still music to my ears but still no consistent words. She tries so hard but nothing comes out sounding like language.
Over the last 18 months Makenzie has been learning to use a "talker". For a long time before that however I would have nothing to do with any kind of communication device. My daughter was going to learn to speak and that was all there was too it. One day I caved in and allowed a speech therapist to come and do an evaluation and I am so glad that I did.
On April 15th 2009, For the first time in 2 years Makenzie was able to tell us what she wanted and liked. I wrote about her first session with her current Speech therapist here. It did not sound like my Makenzie but she was so very proud that she could "speak". I was proud too!
There is still however the part of me that wants so much more. As I watched Makenzie today during speech therapy working so hard at pushing her switch I was again a bit sad. She is so very smart. She has so much to say. I want to hear her voice. I want to her the fluctuation between happy and sad, scared and safe, excited and bummed. I want to hear words that we all take for granted like yes, no, mommy, hungry, thirsty, hurt, tired, sad, and happy.
Maybe one day Makenzie will speak again. I trust and hope in God's healing powers and plan.
But for now this will work for a simple 4 word phrase......
I LOVE YOU MOMMY!
Oh Makezie...... I LOVE YOU TOO!!!!
Believe... Prayer Works
Wednesday, October 13, 2010
Tonight I sat down with 2 of my closest friends.We talked, and laughed and drank a few margaritas. My house is clean, and all chores are done. Refreshing!
I have been caught in such a whirlwind of emotions these days and it was a much needed break from reality.
I have been thinking a lot about Makenzie and her reflux and vomit. While she is doing so much better then she was 3 years ago it is still an issue. She has good days and she has bad days. No matter what we have done over the past 3 years it is good and it is bad. It is frustrating and I just can't help to think about how Makenzie feels about the whole ordeal.
The thing is that right now Makenzie is doing wonderful if you look at her weight. She has a good BMI and is on the charts. This is good... this is REALLY good. What is not so good is the constant reflux despite all the meds and modifications to her formula.
When we went to the GI doctor last week the first thing he did was ask how we were doing. The first thing out of my mouth was... I am so sick of puke! ... So for those of you who think my doctors don't know what is going on they do. So unruffle your panties and move on.
We talked for awhile about Makenzie's feeding, her formula, and her other improvements. He noticed Makenzie's increase in head control and was very happy with how well Makenzie looked and was doing.
As we were wrapping up our visit I asked if we could talk about the FUNDO. We talked about the pros and the cons. We talked about CP and general brain injury and how it related to this issue. We talked about studies. We talked until there was nothing more to talk about.
Here is where I am stuck...... the vomiting stinks but I am not sure that it stinks any more then having trouble swallowing, having constant dry heaves, or ending up with dumping disease. However none of these things may happen and life could be a lot easier. There is just no way to know! Today I sure wish I believed in the crystal ball!
I am so torn. At this point it would be elective. Please pray for guidance and clarity. Please pray that I can hear what God is telling me on this issue. Please pray for healing.
On a side note I thought maybe I would call the school and let them decide what to do about this issue because after 8 weeks they know what is best for Makenzie. I was thinking maybe this would be a good start in the quest to trusting them more and it sure would take the weight off of my back.
Other then that today was a really good day. Makenzie and I have spent the last couple of days relaxing and just taking time to enjoy life. She has been doing so well in therapy and her improved cognition continues to amaze everyone who is blessed to be a part of her life.
More and more every day Makenzie has been able to respond to verbal command with a physical response. It has been so much fun be able to ask Makenzie to kick her legs, put her hand on the floor or keep her hips still, and know that she can and will follow these directions. God is so good!
Sorry for posting a picture with such a horrible quality but she was being so cute and all I had was my phone.
Teen Mom. A very interesting show for many reasons. For those of you that have never seen this show it is all about following the lives of four mothers who had babies at a very young age.
There was one mother and father who really touched my heart. Catelynn and Tyler are amazingly strong. Over a year ago they made the choice to give their daughter up for adoption. They recognized that there was no way they could give little Carley the life she deserved..
In the last episode Tyler and Catelynn were able to go and see their daughter for the first time since they let go of her a year ago. It was very emotional. Kind of sad really. I am not sure I would have been able to walk away again even if I knew it was the right thing to do for my child.
My life started a bit like this story. I was the gift. I had a wonderful life and would not change any of it. As I sat and watched the other side of the story I wondered many things. I wondered what that moment was like for my biological mother. The moment when she held me for the last time. I wondered how she feels about it today. This is not the first time I have wondered these things but to see it in such a real format brought my thoughts a bit deeper.
We all have our own story. The things in life that define each of us are so unique and special.
I think about the stories of all 4 of the moms MTV followed and I wonder how their stories will end. I think about my story.I wonder how it will end. I wonder what will come out of all of this. I would like to think it will be something big. I guess I will just have to wait and see!
God's plan for all of us is perfectly amazing!
Believe.... Prayer Works!
Tuesday, October 12, 2010
The sun is up, kind of. It is dark, cold, and wet from drizzle but it is a new day. I woke up late. Really late to my alarm. It had been going off for almost thirty minutes before I actually arose to its annoying sound. I jumped out of bed and ran into my oldest sons room. He too had slept in because mommy had. It was 5 minutes before the bus came and I could feel the panic set in. Deep breath in, deep breath out. It is a new day remember?
I called a neighbor friend and found a ride for my son as he was clearly not going to make the bus and began to make Makenzie's formula. I started to think about yesterday over the top of my growling blender. I thought for a second about apologizing for yesterdays post.
Was it a bit over dramatic? Yes and no. It is my life. I could put a smile on my face and write only about the peachy, happy fun loving, events in my life but I choose not to. Days like yesterday are tiring. They make me sad and frustrated. I want want is best for every single one of my kids. Plain and simple, and when dealing with an institution that is unbending you can only run into the wall so many times before you break.
The really nice thing about yesterday was that I was allowed to break for the first time in a long time. At 3:30 the nanny walked through the door. I did not have to push through homework, dinner, laundry, showers, dishes, and bedtime routine. I was able to decompress. I was able to take some time for me in my emotional exhaustion because someone else was here to push through all of the other stuff for me. What a gift!
So today Makenzie and I are going to spend some time learning, cuddling, shopping and sipping some coffee on this dreary day. I am refocused and ready to move on. I am sure this isn't the end of my battles over education but today I am not going to think about that.
I am going to think about how well everyone in my little family is doing. My oldest son is getting all A's and B's in school which is a far cry from where he was last year. My 11 year old is doing so well in Math that the school may move him into a more advanced class. My youngest son was recognized at school for good character with an award and breakfast with the principal. He was so proud! Makenzie is doing amazing with therapy. She is learning how to keep her legs quite so that the rest of her body can move as well as coloring lines with her paints.
Everything from yesterday is still here. The sunshine may be hiding behind the clouds outside but today is going to be a sunshiny kind of day! The trials and frustrations will not go away but I feel so blessed to know God trusts me enough to have given me all He has... even days like yesterday.
Believe... Prayer Works!
Monday, October 11, 2010
"Get in line to suck my big toe.... I don't care anymore! Have a nice day"
This was my most recent Facebook status update. It pretty much with out saying summarizes my morning. The comments I received made me laugh. I love my support system so much!
I finally talked to the principal at my daughters school today and to say it went well would be one of the biggest lies I have ever told.
I am so utterly sick of the school system. I am so sick of miscommunication. I am so sick of politics. I am just sick.
As if raising children wasn't hard enough, try raising one with special needs. Try having your life flipped upside down in the blink of an eye. Try living day by day at the mercy of insurance companies, the government, and red tape. Try being the only voice for another human being who is the most innocent gift God could have ever given you. Try being told over and over that your voice is not welcome.
I continue to fight. I continue to overcome adversity. I continue to be Makenzie's voice.
Makenzie's voice is one of most consuming things I have ever been responsible for. The problem for me has become how loud the voice needs to be for anyone to listen. There are so many times I have been shot down while being "nice" only to get loud and somewhat nasty and in the end get what Makenzie needs. Over the course of 3 years it has become apparently clear what the tone of voice must be used in order to get anywhere on her behalf. Let me tell you it is not such a pleasant tone.
It is frustrating because it is not who I am but who I have had to become. I pretty much bypass nice and go straight to the tone that gets business done. I do not have the energy to start at the beginning anymore. I have learned that really there is no point.
There are several things about this conversation that really bug me. First is the idea that they think they know what the best is for Makenzie. I would really like to know where they found an easy button because if they know everything there is to know about Makenzie and what is best for her in 8 weeks I have really screwed up somewhere.
Then there is the constant talk of me needing to trust them. That my friends is earned in my world and they have given me no reason to do such a thing. I have given tons of suggestions not one of which I have seen implemented. I have not seen a signed health plan, a draft of an improved plan after the first was denied, or received a call from the nurse on what issue I would like to see addressed differently.
Last but not least is the idea that I need to give them more time. I am not completely sure but 8 weeks sounds like a pretty good amount of time to acquire a pair of adapted scissors, markers, an adaptive holder and some knobby stamps. That is only the simple stuff. So what may I ask would the time frame be on the more complex issues.....
I am so tired of being told that I am paranoid and over protective. I told Makenzie's PT this afternoon to just tell me it is all true so that I can deal with it and move on. However she did not agree. She told me that every time she starts to feel that I am Makenzie does something that proves differently. I felt a bit better.
I would tell those of you who think that I am to walk in my shoes for a day but that wouldn't be enough. A day in my life is not bad. Try 3 years... walk in my shoes for that long and then we can talk. We can talk after 3 years of sleepless nights, ordering medical supplies, researching and trying new meds over and over. We can talk after you watch your child be put under anesthesia time and time again and then holding her while she screams and chokes trying to wake up from those heavy drugs. Try lifting your child who is long and heavy a hundred times a day because she can not move and play by herself. Try making life and death decisions every day. We can talk after you live for the next 3 years with the heavy lingering idea that maybe, just maybe, if you had done something different in that moment, life would be different today and know in the same moment that even that thought is completely irrational. After you do the above that try juggling 3 other children and a house on top of it all. Do that for 3 years non stop.... then lets talk.
Paranoid and over protective?.... maybe.... but I think I have the right.
I have talked with 2 of her doctors tonight. We will get together the most complete health care plan they have ever seen. LOL!! I can too can invoke a little policy and red tape. Then we will wait.......
I just want to be the mom that can say... I love Makenzie's school, she is doing so great and learning so much!.... Is that really to much to ask? Really?
Sorry for yet another rant. I know there are 2 sides to every story and I am sure I have some idea what the other side to this story would have to say. I am sure it would be just about as pretty as the pictures I have painted but that is ok because I have no red tape, or policy to hide behind. I can use the same annoying words to justify my opinion but the thing is, my opinion is not tied down by ANYTHING other then the NEVER ENDING LOVE I have for my Princess Makenzie. I think that is more then enough to give this "uneducated" mother the right to have some say so in her daughters education. I'm just saying!
So for tonight I am going to love on my kids. Watch some mindless Monday night television, and laugh at the fact I just got an email correcting my spelling of the word "principal" or is it just the "principle" of the matter? Thanks! Glad ya caught that.... not really at the top of my list of things I am going to think about tonight however!
I think I can now change my Facebook status....maybe to something like....
"Thanks for cleaning my feet up..... Moving on! Have a nice night!"
Sunday, October 10, 2010
Today it drizzled all day! Finally! I am not sure why summer has hung on for so long but I believe it is giving into winter at last! Four seasons is why I love where I live. I have friends in other parts of the country who will still be mowing the lawn the day before Christmas. My yard however will be sprinkled with a layer of white snow begging to be rolled up into a snowman complete with a carrot nose. I can't wait!
I did not turn on the heater just yet but tonight it was very tempting. We bundled up for church and after the van warmed for a bit we were off. During church Makenzie usually sits nice and quiet on my lap. Today how ever after several bursts of laughing and much babbling I had to take her out. Another moment that makes my heart sing!
This afternoon instead of hanging at home we headed to the swimming pool. For the first time in over a week my kids were reunited with our friends at their temporary hotel home. Fire or not they are inseparable. My heart has been heavy all week for my boys. I have tried to talk to them about what happened. I have reassured them everything will be alright. Nothing however beats getting to see for themselves that every one is ok by having a great time being boys splashing in the pool and hanging out watching a movie together.
As always Makenzie loved the pool. We spent a while in the hot tub and she was so loose when we were done. Makenzie was able to touch the bottom and she found the stairs. She had so much fun stepping up the stairs and onto my lap. She stood up so strait and did a bunch of weight bearing all on her own. So cute and she was so proud!
We are now home. Everyone is snug in their beds. My son dug out his heated blanket tonight and I am looking forward to a more fall like week ahead!
Believe... Prayer Works!
Saturday, October 9, 2010
It was a nice day. A nice day to go watch a softball tourney to benefit The Rise School. My good friends put together this tournament to support their daughter's school. This does a stand up job of educating children with different needs. It is a school I would love for Makenzie to go to but unfortunately the drive is to far and the price tag is to high.
With help from Mary Beth Graff(Photos), and Julia's dad,Shawn (getting the image to the printer) I designed this banner to hang at the tournament. I am quite proud of the way it turned out! Yes that is me tooting my own horn! Sorry! LOL
Here is Julia with her banner!
It was a bit windy but the company was GREAT! I talked with friends, watched a little ball. The boys ate funnel cakes and made character balloons. Makenzie hung out with her buddy Julia and admired all of the dogs. So many amazing people there for such a wonderful cause!
Once again I am reminded of how good this world is! I am reminded of how many people care! What a great day!
Believe... Prayer Works!