Thursday, August 30, 2012
Thursday, August 23, 2012
Finally settled back in from our hospital trip to Riley Children's Hospital for Makenna's Endoscopy, it was a long day. Mak did awesome, she didn't cry before they took her so they didn't have to sedate her which was great thanks to one of the nurses that became her friend while waiting. She came back and told us she passed out very quickly and calmly. Only took about a half an hour and then the doctor came in and talk to us. He said from what he saw everything looks great and he took biopsies of her esophagus, stomach and small intestines and that's where he thinks the results will be if there will be any, to see if she is breaking up the sugars the way she is supposed to be and a few other things. This was more of a due diligence type of test to rule things out so we know where to go from here. He has a couple test he would like to do if nothing comes of this but no more procedures, which is good! He did say he did not see any signs of Celiac, so that is a plus. She had a rash today from sneaking ice cream the other day so he was able to see that today which is good also. We had to wait a little longer for her to wake up after we talked to the doctor. All of a sudden I heard a child crying and thought that sounds so familiar, I bet its Mak! I looked out and saw her sitting up on the bed as the nurse was rolling it down the hall way, yelling, OUCH, OUCH and crying very loudly. They had to give her an IV after they put her out to keep fluids in her. The nurse would not take it out until she drank some water, that was a struggle but finally got it out and she calmed down a bit. She was a little groggy but that is to be expected! So now we just wait.
Posted by Megan at 6:52 PM
Tuesday, August 21, 2012
So I am driving to Indianapolis tomorrow to take Makenna to Riley on Thursday morning for an Endoscopy to see if they can find anything that is causing her fructose Malabsorption. They will be doing a biopsy as well while looking at her Esophagus, Stomach and Small Intestines. She is scared and I am scared being the first time I will have a child being put under and possibly sedated if she does not leave my side calmly. She has already told me many times she will cry and wants to hold my hand.
Sometimes I wonder if I am doing the right thing. All these tests we are putting her through are very hard on her and us mentally and financially. We can live with this, we know how to stop it from happening... but I can't help but think there's something causing it and if we can find the cause maybe we can stop it from happening all together. she misses out on so much... cake and ice cream at birthday parties, popsicles on a hot day, a sucker after she goes to the doctor and Halloween candy, she can't have any of it. If we don't keep this stuff out of her diet she has to suffer with a very painful rash and major mood swings that are uncontrollable for all of us. It's so easy to slip up, there are over 2 dozen ingredients she can't have, it's next to impossible to keep track of it all. And going out to eat is very difficult and does not happen much... so I guess I am doing the right thing.
I just hope we get the answers we are looking for and can find a cause that can be controlled with medicine or gone forever. I can only hope and dream that someday my daughter can live and eat as her sisters and brother do. Please keep us in your prayers Thursday.
And thanks to Aunt Jarilyn for letting us crash at your place and hanging out with us at the hospital!
Posted by Megan at 8:18 PM
Wednesday, August 15, 2012
They all did really good. I think for the little they got cut off it was a waste of money. We will be going to Grandma J from here on out. I just wanted to see how well they would do and get it trimmed up before they start school tomorrow!
I now see that the twins have my hair, its a natural curl throughout that wont go away and can't do anything with it. And Mak has straight as can be hair.
Good job girls, so proud of you for being patient while we waited and sitting there without crying! They are getting so big. We have taken so many trips to the store lately and taking them out to do other things in general now that they are older and listen better - they are actually starting to answer people when they talk to them. I think school will help with it a lot too. They were not happy to leave after orientation today and JJ did cry cause she wanted to stay and play. And Maysie did not want anyone to take her baby doll. Had to explain to her it was not hers and she has to share. We will see how it goes. They are getting too big too fast!
Posted by Megan at 8:17 PM
Posted by Megan at 8:12 PM
Saturday, August 4, 2012
The girls start school in two weeks! So sad but so excited for them because I know they have been looking forward to it. Hoping they do great and are not so shy like usual. They had to wear their pretty outfit for school they they picked out all by themselves!
Posted by Megan at 6:25 PM
Took the kids on a mini family vacation with my side of the family. They had a blast, think we all had a good time. It went much better than expected. It was on Lake Matteson in Michigan and my mom found 3 little cottages all in a row, right on the lake with it's own beach and water trampoline. There was my parents and then my sisters and their husbands and daughter. So we all pretty much had our own cabin. My parents shared one with my lil sis and her husband! We were very weary of the fact that we were surrounded by water, 3 sides of us... but they did really good staying away unless they were with someone. They caught bugs, jumped on the trampoline with Greg splashing them from underneath (which they LOVED), took paddle boat rides, played on the beach and built sand castles, played on the swing set and found turtles, ducks and visited each cabin multiple times! Thankfully JJ slept with my mom and dad the first night and Mak slept with them the second night so I only had 3 to worry about throughout the night each night. And very unexpected... I was able to sleep ALL NIGHT long. I was afraid they would be up on and off all night, but for the most part slept straight through. Josh got his own bed each night. The first night Mak slept all by herself in one of the rooms and I slept on the pull out bed with Maysie and Jace slept on a big chair! The second night was a little more tight cause JJ and MJ had to both sleep with me and Jace slept on the chair again. Overall it all worked out really well and did not have too many issues or tantrums! Took them to play putt putt - that did not go so well... they just were too young and then took them all for a go cart ride and they LOVED it. MJ was so devastated because she wanted to go again! We caught a Praying Mantis the first day and got to watch it eat other bugs... did you know they HATE ants! He would freak out with them but sure did chow down on the other bugs. We let him go free before we left. Thanks mom and dad for a great little family vacation!
Posted by Megan at 6:14 PM