I wrote this condensed journal of our year while Makiah was in the hospital earlier this month. At the end of this post you will see a few changes and additional thoughts. While this is just an overview, believe me as long as it is, it is an overview I wanted to share with you all that despite everything God was in the midst of it all!
I hesitate to write this because the year isn’t quite over and I am almost afraid to see what else might happen, but here goes!
Last year on December 26, Makiah started having symptoms of the stomach flu. I didn’t think too much of it, I mean it’s just the flu right? I know what to do to help her through it. Well, after a week of no change and actually, she just seemingly got worse I took her to the pediatrician. They ran a few tests; everything came back normal so we continued with the assumption that it was just a really bad virus. On January 8th I had to bring Makiah to the E.R. because she was weak, pale and now bleeding. Something was desperately wrong. She failed the blood pressure test (nearly passed out when she stood up) and was admitted. The next day they did a colonoscopy and confirmed ulcerative colitis (an auto-immune disease). I wasn’t even sure what that was, but I knew I didn’t want my daughter to have it. I learned a lot in a short period of time, none of it good. She spent a week in the hospital and the next three months on oral steroids.
Toward the end of January I started having horrible abdominal pain. After several days I decided that something was wrong and ended up in the ER. My gallbladder had gone rogue, so out of me it had to go! The end of February my gall bladder and I parted ways. I spent the better part of February sick and the better part of March recovering. Makiah was still taking steroids but showing great improvement and it seemed like the oral meds were doing the trick for her UC.
April was a glorious month. I was finally well again and Makiah got to stop the steroids and got to eat almost normal again. The last two weeks of April felt like Heaven, no illness, no meds, no pain, no bleeding . . .life was feeling normal for the first time in four months. (I didn’t know this in April, but April would be the only month that no one was sick in any way!!)
May came with celebrating a 12th birthday with Hello Kitty cake and a trip to the mall with giggly pre-teen girls. She had so much fun. A few days later Makiah and Sam took a trip to Indiana to spend the week with Grandma and Grandpa. Makiah called the next day and said she was bleeding. A flare! No way! So she tried to hang tough, but ended up coming home a couple of days early and ended up in the hospital. It was a bad flare and she ended up finishing out the month of May in the hospital. After exactly two weeks inpatient we went home. Oral steroids and a new medicine added to try and control the flares.
After being home for a week the pain and the bleeding were back. So back to the hospital we go for another ten days. If you lost track its now June 13th. She had lost nearly twenty pounds and needed blood again. They put her on TPN (IV nutrition) and made the decision that she was going to need Remicade treatments to keep this disease at bay. We finally got to go home. But this time home came with a lot of extra stuff. Home came with a PICC line, TPN at home eighteen hours per day, IV steroids and nurse visits twice per week.
The entire month of July was spent out of the hospital, but our house looked a little like a hospital. She still had the TPN and steroids and developed Cushing’s syndrome from all the steroids. The absolute highlight of this month and the whole year really is that on July 17th Makiah was filled with the Holy Ghost!!! Needless to say, we spent a lot of time at home. She was weak and easily tired.
August 3rd brought great jubilation. She got her PICC line out, no more TPN or IV steroids. Just two more weeks of oral steroids and she would be free from them! We knew that we had done everything we could for that poor colon and we were just praying it would behave itself. We knew that if she had another flare, there would be no more treatments; it would just mean surgery because it was an unruly colon. On Monday, August 27th Makiah started having pain. I knew. Deep down I knew we were going back to the hospital and surgery was the only option left. On Thursday, the 29th she was due for her Remicade treatment and I called her GI doctor and let them know she was in pain and the bleeding had started again. We all knew, none of us said it, but we all knew. They ran the Remicade and drew blood. Confirmed a flare. Good thing I had packed a hospital stay bag.
We went straight from the infusion center to admitting. Before we had even been assigned a room the surgeon had been called for a consult. It was a lot to take in, very overwhelming. Makiah was ready for it; she was just done with the pain, medicine and hospital stays. So on September 5th she had a total colectomy. It was a traumatic surgery and a lot to learn about care and so forth and we knew that two more surgeries were coming. Finally, on September 24th she was discharged with no more steroids, no more colon pain.
The month of October was good in so many ways. The Cushing’s went away, the weight gain from all the steroids started to fall off of her and life resumed. She went to sleepovers, homeschool co-op, had fun and was just 12. It felt good. I had to keep reminding myself that it was fall. I kept thinking it was summer because, well, summer had vanished. Literally. Makiah wrote a song and gave her testimony at church, so powerful. At the end of the month the stomach flu hit our home. Most of us just suffered through it for about eighteen hours and then we felt better. Makiah, on the other hand quickly dehydrates now because of the ileostomy. Ten hours into her having the flu she nearly passed out and off to the ER we went. She was admitted and in a room within two hours, where she spent a week recovering from a twenty-four hour flu. Discharged on November 2nd. Crazy!
November was good (excusing the first couple of days), we had more sleepovers and fun homeschool projects and everyone was well. Yay! Thanksgiving came and went with much joy and thankfulness for all that God had seen us through. We scheduled the second surgery, as Makiah continued to recover, for January 10th.
Here we are today, December 13th. It’s been a rough week. I got the stomach flu Monday and immediately began praying a shield over Makiah. Wednesday night Daniel started vomiting and my heart sank. Last night Linton and I had a lovely night out with friends at the symphony and on my way to pick up the kids I got the text. The dreaded text, “Makiah’s belly is hurting badly”. Before she could even get in the car, she vomited in the parking lot. She struggled all night long and this morning we made our way to the ER after talking with the surgeon. I am now sitting bedside to my broth-sipping girl. A winter storm is bearing down on St. Louis and I am feeling reflective.
I realize that this account is devoid of a lot of the emotions. Believe me there has been a lot of emotion this year, but I thought I'd spare you! It’s also devoid of other fabulously good (like how spiritual my girl is and how she has deeply connected to God) and crazy things that happened (like six flat tires and a couple of other van issues!). I could seriously write a book about this year alone, the good, the bad, the scary, the fabulous, the peaceful, the shocking and the list continues; but for now this account is long enough.
When I say it’s been a hard year, I mean it. There was only one month where there was no illness or surgical recovery for anyone! And there has not been one month that didn’t include any doctor visits, blood draws or hospital stays. But surpassing the hardness of this year is the amazing peace and amazing joy God has given our whole family. We have seen mighty wonders come from all these trials. And while I know this year isn’t over yet and we are going to send out 2013 with another major surgery, there are a couple of things I know for sure: God is good all the time and He never changes. And no matter where I am or what I face, He’s got it firmly in His grasp and I need not fear!
It is the last day of 2013, she would have been in surgery right now, but her body wasn't quite ready so her surgery has been scheduled January 10th. I'm thankful to be spending the day with my family and spending the evening and stroke of midnight with our church family. I'm looking forward to amazing things in 2014!
Daddy's girl!! December 2013
Mama and two of her babies December 2013
At this point in October she as already improving from the Cushing's, but you can see the change now!
Daddy's girl!! December 2013
My sweet and silly Sam (who is looking too old!!) November 2013
Mama and two of her babies December 2013