Monday, February 27, 2012
Sunday, February 26, 2012
I am so sorry it has been so dang long since I last posted.
It has been a very long last couple of weeks.
To start with Makenzie's pump has been refusing to infuse her water. It doesn't seem to matter how many times I trade the pump out for a different one it still tells me all night that there is "no food". This issue has landed me watching her pump for about four hours every night from about 10pm until about 2am.
Then to add insult to injury poor Makenzie got the cold of the season.
She woke up on Tuesday morning with a runny nose and a low grade fever. Tuesday was phenol block day at the hospital and despite her cold symptoms we went ahead with the anesthesia and procedure anyways. She did well and we were back at home a bit groggy and nauseated but no worse for the wear.
Wednesday Makenzie woke up with a full fledged cold. No matter how on top of Mucinex and suctioning out her little nose Makenzie could not breath...... or sleep for that matter. I took her to urgent care to make sure she did not have strep (which her brother was diagnosed with on Monday night) or another strain of the flu. She had neither. We spent most of the night sleeping while sitting on the couch.
Despite her cold Makenzie and I were asked last week to bring the power chair downtown to meet with the therapist who fitted her for the chair and show off for a bunch of big wigs who were potential donors to the clinic and show off she did!!!!!!!!!! Makenzie was a bit freaked out when a bunch of tall men walked in the room sporting suits, ties, and shiny black shoes but after about 30 seconds she got on with her showing off! She showed Ms Kelly and all of the business men how she could turn and go straight. Makenzie felt like the room we were in was not big enough and tried a couple of times to head out the door and into the hallway. We adjusted her switches a bit and determined that her Aspen seat needs another overhaul because Makenzie has grown so much!!
Thursday Makenzie did not wake up feeling much better. However we had a big dinner to attend in honor of Makenzie's aide at school who was receiving a very prestigious award for being a rock star at what she does. So about 1:30pm Makenzie got a good full body rub down from her massage therapist and then took a 4 hour nap getting up just in time to get ready for dinner.
We drove down to the dinner with Makenzie's massage therapist who just happens to also work for the school district to honor several AMAZING people. We had a GREAT time. It was so much fun to see so many of the inner workings of the district in one place and made me appreciate Makenzie's school even more then I already did if that is even possible.
Makenzie slept pretty well on Thursday night which was great for her but her annoying pump once again kept me from resting and I woke up Friday morning ready for a nap.
Friday Makenzie went to school only long enough to receive a star award and head home. She was honored for the student in her class who has made the most academic progress this trimester. Watching Makenzie go up with her aide and receive her award made my heart almost explode with pride. When they called her name the gym exploded with applause and even her massage therapist was there to watch her be honored! So dang proud.
Then we got to go back to the school in the afternoon to watch her big brother get the same award. I am not sure my heart could be any full of pride as it is right now!
After Makenzie's sinuses spent most of Friday draining I was convinced we were at the end of this cold until she woke up about 12am with a seal bark for a cough. CRAP! We spent a good long time in the bathroom breathing in steam and then another long will on the porch letting the cold air clear up her airway before sleeping the early morning away sitting up on the couch again.
Saturday there was no need for a decongestant because there was no drainage. I gave her a dose of steroids to help with the croup and she slept all night!!!!! Too bad her feeding pump did not cooperate. It kept me up into the wee hours of the morning once again.
Today just when I thought this was all done her drainage is back. I am tired. I am cranky. While it is some of the most precious time spent with Makenzie, my body hurts from sleeping on the couch with a growing girl on top of me. I have said mean things this week to people I love out of my exhaustion and frustration. I have been short with my kids and my house is a wreck. Please pray that Makenzie gets to feeling better soon. Pray that her pump decided to just run tonight and I get some sleep!
Believe.... Prayer Works!
Wednesday, February 15, 2012
I neither love or hate Valentines day.
I know several people who struggle on this day for many different reasons and I also know several people who LOVE this day and take Valentines to the extreme. I stand right in the middle. Valentines day is just another day in which there are school parties, candy, and a bit of extra reflection about the things that I love.
Makenzie and I...... ok mostly I, made Valentine cards for all of her friends. Her cards involved wet crayons, stinky melted crayons, cutting, pasting, and many thoughts about why a simple princess card with her name on it would not have sufficed. However, once the cards where done I was so glad I took the time to peel paper, melt crayons, design a Valentine, cut out hearts, glue hearts to foam, and hot glue heart shaped crayons to Makenzie's Valentines to create this..................
She loved her special valentines and had a great time today passing them out to all of her friends. While for Makenzie all of this looks a bit different then I had imagined I LOVE having a little girl that I can make fancy Valentines with.
Makenzie has gone to school for almost a full day a couple of times in the last two weeks. She did really well. Today was one of those days. She was scheduled to go in the morning but because her party was at the end of the day we arranged for Makenzie to stay until the end of the day.
After dropping her off and working on setting up the wheelchair mount onto Makenzie's school chair I headed home to make Makenzie's formula and then headed back to the school to feed Makenzie lunch. As I walked through the school on Valentines Day with Makenzie I just couldn't help but think about how much I LOVE her school.
We sat in the cafeteria where one of the aides gives Makenzie knuckles every day. Makenzie puts her hands up for her and then giggles so hard. The sheer joy on both of their faces just makes my heart melt!
Seeing her aide, teacher and friends love on her in the classroom is almost too much! Today two little boys read books to Makenzie. A little girl wrote a note that read.... " I love Makenzie" and when we left, there was a united corus of "Bye Makenzie" that rang a sweet sound in my ears. All of the staff loves her and I had one teacher tell me yesterday how Makenzie can brighten even the hardest of of her days! LOVE!
After the first three hard years of school it is still hard for me to believe that I could like the school let alone LOVE it and be trying to figure out how to get her there more hours every week! A huge Thank You to each and every person that makes Makenzie's school such an AMAZING PLACE! A place that this mommy can LOVE!
I am LOVEing couponing! I am still far from "Extreme" but when you can go to Wal Mart, Target, and Walgreens and get all of this.............................
and pay $2.57 (which was more or less tax) for $105 worth of product...... that I will use......... it is well worth the time!
I LOVE watching my boys play hockey and getting back into a more normal place back on the sidelines! I have always loved sports and have missed seeing my boys be a part of them over the last 5 years.
I LOVE my friends who sent me Valentine wishes and even flowers!
I LOVE my family who support me and my kids every day! Showing up at hockey games, bring me chocolate, and spending hours working on a desk unit in my dining room (pictures coming soon) and taking me out for dinner for Valentines Day. (tomorrow, because I refuse to step foot in a restaurant on Valentines Day!)
I LOVE my insurance company.... yes I said that out loud! I also LOVE the people behind the scenes who bill the insurance for all of the companies that provide Makenzie's supplies and equipment. As I look around my house I see a talker, power chair, Aspen seat, walkers, standers, braces, feeding pumps, diapers, wipes, and many other supplies that keep Makenzie going without breaking my pocket book. AMAZING!
I LOVE Makenzie's therapy team. I could not ask for any better! Makenzie's right abductor has been tight for a while. Last week Makenzie's PT was sick and could not come. By Saturday Makenzie was very uncomfortable. I made a few phone calls and found her massage therapist in my living room trying to rub out some of the spasms in Makenzie legs on Saturday night at 8:30pm.LOVE
I LOVE having teenagers. Yes it is hard and no I am not perfect but watching my boys grow into young men is amazing. Just when I get down and think I am failing them I realize that the best that I can do is enough. Today Mr 14 was not feeling well so he stayed home. I had to go to the middle school to drop of his pre registration for HIGH SCHOOL this afternoon. I handed my son's paper work to the security guard at the front door and asked if she knew where I needed to bring it. She looked at the name on the paperwork and smiled. She then proceeded to tell me what an amazing and respectful young man my son was. Melting heart..... again! I don't know how many kids go to that school but it is in the hundreds and this woman knew just who my kid was and it wasn't because he was noticed for undesirable reasons!!!!! LOVE!
Which leads me to the most important LOVE there is and that is the LOVE of God. I am so thankful that I have a LOVEing heavenly father who covers all of my imperfections and struggles with his LOVE, grace and forgiveness! Even when my human LOVE is not enough, even when I can not humanly be exactly what my kids need me to be God promises to take over and promises to provide the rest.
So yes it is Valentines Day. A day marketed mainly for romantic love. I personally however am lacking in the romantic department even so there is still sure a TON to LOVE on this Valentines Day. Flowers and chocolate just make it all that much sweeter!
Happy Valentines Day!
Believe.... Prayer Works!
Tuesday, February 7, 2012
I don't know where all of my time is going. I look back and have no idea how I found the time to post here every single day for over a year.
Life has been busy and I have so much to say but so little time to say it!
Makenzie seems to have fully recovered from the flu. She is back to her normal happy self and this mommy is so happy!
Today Makenzie had a little adventure at school. I got a call from the nurse about 10 minutes before pick up time to tell me that during a diaper change Makenzie's g tube had come out. Crap! I was not upset with her school team at all because this happens however the last time her button came out it ended in a trip to the ER and today just wasn't the day for that.
I rushed home from the grocery store to pick up her extra button and then to the school in a grand total for 8 minutes! When I got there Makenzie was in the nurses office laughing with her aides having a good ole time! I got everything ready and slid the new button right in on the first try. Makenzie gave a pretty good sized pouty face but there were no tears ( except for her aide). I am not sure if me or her aides and the nurse had a bigger sigh of relief after it was back in but I think we were all very relieved!
Even if the button would not have gone back in I would not have been upset. I know the aide who was changing her felt horrible I hope that she understood by the time I left that this really is not that unusual and I have done the exact same thing more then once! The school did EXACTLY what they were supposed to do. I don't think Makenzie could be any more safe and well cared for at school! I just LOVE all of those people so much!
It also dumped 15 inches of snow on Friday and Saturday. We really have not had much of a winter around here until last weekend. We were more or lest stuck at home for a few days. I watched as post kept rolling in from friends on facebook about stocking up for the storm and I just had to chuckle as I looked over at the piles of food I have managed to score for pennies over the last 3 weeks since I started couponing. There was no need to run out to any store before the storm hit. Even after being snowed in for 3 days we did not even put a dent in our new stores! Let me tell you what an amazing feeling that was.
On Sunday I took Makenzie out to play in the snow with her brother. She LOVED it! She giggled as the snow crunched under her feet. She waded through snow up to her knees and even laid down in the white magic long enough for me to snap a few pictures and make a beautiful snow angel!
Two of my boys have also started playing roller hockey. They are having so much fun! This is the first organized activity I have allowed them to participate in since Makenzie's accident and it feels so good to be back on the side lines cheering my kiddos on! I did not realized how much I had missed being a "soccer" or in this case "hockey" mom!!!!!!
There have been moments already where I have wondered if I bit off more then I could chew when it comes to fitting two more activities into our lives but we are making it work and the boys are having a ton of fun!
Makenzie and I are also preparing for our first real..... in the van..... for 13 hours...... across the country..... road trip in just over a month! I am so excited to be in attendance at a good friends wedding where I will watch my daughter, all dressed up like a princess, WALK down the aisle as a flower girl!!!! More on that to come soon!
Even though live is very busy....... it sure couldn't get any better!
Believe..... Prayer Works!