Updates time! Every time I get ready to type a blog update I have to look back at the calendar to jog my memory about what we accomplished this week. We work on a day-to-day basis and once it gets checked off the list I tend to push it out of my brain to make room for more important things. But we managed to cram in a lot of activity over the last seven days.
Malachi absolutely loved going to Vacation Bible School this week. We made sure to call it “VBS” instead of it’s formal name- we forgot a few times and his face lit up thinking he was going to get to go to school.
Often when people look at Malachi they see him as a fragile little boy and don’t want to try too much with him. We always explain to people that he is very much a five year old boy who loves to talk about bodily functions (poop, farts, etc) and loves rough play. When water day at VBS rolled around I told them to soak him! They looked at me like I was joking, and I explained that we had prepped for the water and everything he was wearing and riding on could get wet. They sent me this video:
He made it 4 nights without having a single seizure at VBS and had just a short minute long one on the final day. At home he is only having about 2 a day which we are pleased with. He will go to the neurosurgeon next week and we will talk about these new seizure changes/types with him.
We started summer therapies with both boys this week which kept us on the road Monday and Tuesday. Malachi had his first swim therapy lesson and he wasn’t so sure what to think. The whole concept seemed to confuse him but we think he will do better next week now that he has a frame of reference. Then immediately after Malachi’s water session, Levi had his first physical therapy session.
So far it seems that he is progressing at a decent pace. He isn’t too far off the mark as far as milestones go for his corrected age. This week he will hit 7 months old!
We had a very frustrating appointment day this week that had me pretty riled up. A few weeks ago we met with Levi’s pulmonologist in Chattanooga for the first time since the NICU consult. That appointment went well- so well that he asked that I come back on one of his days off so we could talk about the different things the Cincinnati team had tried on Levi. He was so curious to learn about what worked and what didn’t for future patients. He said in exchange for me taking the time to walk him through the photos and videos he would type out a solid Complex Care Plan. A CCP would travel with us and anytime Levi unexpectedly ends up in the hospital it would be a step-by-step plan for his providers to follow as far as oxygen. It would prevent us from having to fight against intubation.
So Friday was the day of that appointment. Jake and I woke up bright and early at 6:45 and packed up the boys and headed to Chattanooga, a 1 hour drive from our home. As we drove I explained to Jake that this appointment shouldn’t take long and we could make a date of it! There were some “Escape” rooms close by that were willing to let Jake and I take the boys in as an anniversary date.
We got there early, as we usually try to do to make sure we are being respectful. We checked in and we waited. And waited. And waited. After an hour of sitting in the waiting room I stopped by the front desk to make sure we hadn’t been forgotten. She said that the doctor was running behind, which sounded odd since this was supposed to be his day off. When we scheduled it a few weeks ago they chose this day because he was off and “wanted to be able to devote a solid hour to talking with us. ”
After 30 more minutes of waiting the receptionist offered to have one of the other providers see us, since the one we were scheduled with was so far behind. I explained to her that the only reason we were here was at the request of that doctor and he had asked us to come in. This is when I started to get beyond frustrated. We were taken back to a room where the nurse explained that there were still two other patients ahead of us to see the doc.
I went back out to the front desk to ask if we did see the other provider if he would be able to give us the Complex Care Plan that the original doctor had typed out for Levi emergencies. While I was talking to the receptionist I noticed the doctor that we were so patiently waiting on was sitting in the back room behind the desk. Not seeing the two patients ahead of us. Just sitting.
I took a deep breath and tried to make up excuses for him in my head as the receptionist went back there to ask him about the Complex Care Plan. My imaginary excuses were WAY better than his real ones as he came to the front desk to apologize for running behind. He explained that he was a little mentally slow as he had just gotten back from his vacation in Europe and was jet lagged. He said that it would be fine for us to meet with his co-worker, to which I replied that the ONLY REASON WE WERE THERE was because he asked us to come in and meet with HIM on his day off when he would have time to talk to us?! He said that he decided since he was scheduled for us that he would go ahead and fill his schedule with other patients for the day.
Then the kicker comment came: “Well I have an appointment at noon anyway that I have to be at so I won’t be able to meet with you today.”
It was 11:45. We had been there since 9:30. I asked if we could at least get his complex care plan, to which he replied he had not done one.
I don’t quite know how to explain my emotions; Levi’s face in the above picture is a pretty good summary. It wasn’t so much anger, but just a feeling of being so disrespected and not being able to do anything about it. As a special needs family, we have to get up hours before a typical family for an appointment like this. We have to pack oxygen tanks, feeding pumps, food bags, emergency kits, wheelchairs, bottles, medicines, and so much more in preparation for a day like this. I literally have to make checklists of things to make sure to pack for every possible scenario and the prep for an appointment day takes hours.
I asked the receptionist if we could be seen by the other provider and he came in within a few minutes. We started allll over with this man, explaining Levi’s Cincinnati history with him and trying to come up with a plan for him. This doc said he was willing to type up a Complex Care Plan for Levi and would be happy to take over his care as we explained we are DONE with the other guy.
Side note- the original doc was also the one who said he would contact Cincinnati for us while we were in the Chattanooga NICU…and he never did. Doc #2 is the one who actually followed through for us and helped facilitate the transfer to Cincinnati. We have a lot of respect for him and are happy that he is willing to take Levi’s case from Doc #1.
Okay, so why the long ranting and raving story? Frankly I just wanted to vent. To tell you the truth, there is usually always a story like this in each blog entry- but I usually end up deleting them as I see they did not serve a purpose. But I also know there are several medical friends that follow the blog and I want you to see a perspective from a special needs family in a situation like this. Unfortunately, appointment days like this are far too common. We have been forgotten in waiting rooms before, spent 4+ hours waiting to see doctors, and just been treated with so much disrespect. Yes, emergencies happen, and we have been the cause of others missing their scheduled doctor times due to our boy’s emergencies. But please understand how much time and effort goes into being on time to these appointments and if you only knew the sacrifices we have to make just to get there. A little empathy goes a long way in SN land.
By the time we left neither Jake or I felt like heading to our “Escape” room adventure so we changed plans and went out for an anniversary lunch instead. We don’t buy each other gifts, and in place try to make a memory. We hadn’t been to a “Fancy Restaurant” in years and thought we might be able to pull it off at lunchtime with the boys.
We went to an old favorite, J. Alexanders and as soon as we walked in (picture a wrecking ball of medical gear walking into a china shop) I felt out of place and embarrassed. I look at my drool stained top from snuggling Malachi, trying to keep him happy as we waited. And I just felt so unworthy of being in such a nice setting. Our lives are practical. Our lives are comfortable, in a chicken casserole southern way. Our lives are survival and combat gear. Our lives are unpredictable seizures. And our lives are filled with poop. Lots and lots of poop.
They led us to a table, and as they always do, everyone stared as we walked. I could feel my face turning red and I had to take a deep breath and remind myself that YES…we did in fact belong here. Jake and I are celebrating 10 years of a beautiful marriage. Our lives may not be comfortable and neat like the people eating at the tables around us, but we deserve to celebrate!
And it was delicious.
Our anniversary was actually on Thursday, but since we had a packed schedule we chose to celebrate on Friday when we would be in Chattanooga anyway. But we also felt like we couldn’t just ignore the day completely on Thursday so we went to a local arcade and spent an hour and $20 competing, Jake and Leah style. If you know us you are probably smiling right now. We are a very competitive couple and always have been. But it is all in good fun and we really had a blast. I think we are going to make that a new tradition for anniversaries. Can you imagine us as 80 year olds ski-balling it up?! We also went to a local restaurant Thursday night after the arcade and ate desserts for dinner.
And for all you Rumpke the bear followers out there, he has not been back! He must have caught wind of our plan. We still assume he is coming every night and have the shotgun out and ready to go in case he returns. He hasn’t been by our house but has been over at the neighbors based on some prints he is leaving- some even on the side of their actual house next to the windows. YIKES!
One of the things that I love the most about summer time is the amount of time Jake and I get to spend together. We have yet to run out of things to talk about, but one of the things I cherish the most is our conversations about God. I am so blessed to be married to someone that loves the Lord as much as I do. We talk about really deep things, and then sometimes we talk about useless things like what country Guinea Pigs are originally from (let me save you the time on Google and tell you that they were originally a food source in Peru and Bolivia…nasty huh).
But one of the more common things we talk about is the charge we have been given in raising these two boys.
This week I was reminded of a simple verse in John 3 and I read it with new eyes:
“He must become greater; I must become less.”
In it’s original context, this was spoken by John the Baptist in reference to Jesus. But I want to rewind a bit and take you back to before John the Baptist was even born.
In Luke 1 we read about Zecheriah and Elizabeth, two people that earned the adjective “righteous”. It also mentions that Elizabeth was unable to have children. One day while Zecheriah was in the temple he was visited by an angel. The Bible says:
13 But the angel said to him: “Do not be afraid,Zechariah; your prayer has been heard. Your wife Elizabeth will bear you a son, and you are to call him John. 14 He will be a joy and delight to you, and many will rejoice because of his birth, 15 for he will be great in the sight of the Lord. He is never to take wine or other fermented drink,and he will be filled with the Holy Spirit even before he is born. 16 He will bring back many of the people of Israel to the Lord their God. 17 And he will go on before the Lord, in the spirit and power of Elijah, to turn the hearts of the parents to their children and the disobedient to the wisdom of the righteous—to make ready a people prepared for the Lord.”
I remember reading these scriptures when I was pregnant with Levi and praying these over him. I prayed that he would be a joy and a delight to us and that people woudl rejoice because of his birth. I prayed that he would be great in the sight of the Lord. I prayed that God would choose to fill him with the Holy Spirit even before he was born. I prayed that he would bring people to God with the spirit and power of Elijah. And that he would prepare people’s hearts for the Lord.
So fast forward to that scripture this week: “He must become greater; I must become less.” I thought about the fact that, like John the Baptist, God has prepared each of us for specific tasks. Some of us find those tasks early in life. Some later. In John’s case, he knew that he had reached his task of preparing the way for the Lord, and stated “He must become greater; I must become less.”
I look back at our relationship and see all the ways that God prepared us for the task of raising Malachi and Levi. And as we dive into this new life as parents I find myself saying “He must become greater; WE must become less.” God’s presence in our family must grow greater, and our selfish tendencies must become less. As I thought more about these words from John I couldn’t help but see the beauty and contentment in them. He understood that he had been created for that moment…that task. And it brought him joy to do it.
I pray that God’s presence in our family only continues to grow greater, larger, and more enveloping. I pray that Jake and I are able to remove the selfish moments from our lives when we forget that this task we have been given is one that is so rich with beauty. What a gift we have been given to have two daily reminders that refocuses us and our priorities in life.
Please pray for safety this week as I take Malachi back to Vanderbilt to see the orthopedic surgeon. There have been so many negative changes in Malachi’s spine, feet, hips, and legs and I am afraid we are going to have some pretty intense conversations about the next steps. Next week we will be taking Levi back to Cincinnati so we will be covering lots of highway over the next two weeks. We also have a host of other appointments sprinkled in throughout the week to try to get through. Pray for health and strength for all four of us so we can be at our best.