We have been busier than ever with doctor visits for Sam and Sarah. I'm not sure if I shared on here that their beloved pediatrician retired last year....without my permission LOL I was devastated. He was one of a kind-old school and he always supported and guided me. We'd been together since Steve was little so it was a blow! THEN I had to find a new one....Lord.... I knew I was not going to stay with the practice without our doctor so I tried a new doctor ...she was a mess Just the way she talked to me I knew she was not for us. Then we tried another doctor within the same medical association. I liked her and we really bonded but after getting various requests from some of the folks who deal with my three kids the Office Staff decided our kids were not a good fit for them! Yep the office staff did not like all the requests that came through monthly for my kids. Evidently the nursing agency asked for some type of paperwork and was angry when the office staff couldn't or wouldn't do what they needed. I knew nothing about it until it was resolved. Anyhow I actually cried when I got the call from the office manager. When I say cried I meant from anger! I demanded the doctor call me herself. She did and apologized about the whole thing and I believe it was from her heart, She told me even the other doctors in the practice did not want the responsibility of dealing with my kids-they were not set up for such medically complexed kids.... ho's that for a kick in the gut? A trained doctor didn't want the responsibility of what we deal with on a daily basis. (after i typed all this I saw I had already shared it-oops it was awful!)
Thankfully I had already been looking around before this since Sam and Selah turn 18 this year. I had an appointment for Sam at Orlando's Arnold Palmer Complex Care. A Complex Care doctor cares for the person from childhood-adulthood...
So Sam went a few weeks ago as I shared earlier but now we are starting on the rounds of various specialists for him. Last week we went to the pulmonologist. Sam has absolutely terrible sleep apnea. Some of it is still due to his prematurity. He has very small airways. We had taken him to an ENT & there was talk of removing his tonsils and adenoids and even doing some work on his nose! But after hearing it would probably only help him by 10% we were not willing to put him or us through that. Sam can not wear any type of c-pap. First he would not wear it because he is so tactile defensive. Second when he messed with it _not if- the pressure of the oxygen could literally blow out his eye if he were to move it near his eye. So he has a hospital bed which has helped alot and he sleeps with a pulse oxygen monitor on his foot. But he has terrible episodes. We are used to seeing very low numbers like heart rate in the low 40's oxygen levels in the low 80's..... his actual heart rate runs around 60 at the highest. His machine had to be reprogrammed or we'd be alerted dozens of times some nights. They are going to be doing some testing to see if there is anything we can do. In fact a respiratory therapist is coming to our home and doing some tests on him. For that trip I invited Daddy to come with us! I did not want a repeat of the last visit. One thing that was so neat is that we stopped for gas on the same exit our son Shad is training at a prison and he was there on his lunch break! That just made me so happy to run into him like that! Sam has a slew of appointments coming up in May. Right now I'm planning on staying over a few days in Orlando with him. Follow up with pulmonologist follow up with the pediatrician, Upper/lower GI and an appointment with a physiologist and some other testing, x-ray and blood work. At the same time he also is having a SSI hearing via phone. It's going to be busy!
Sam got his reward at CFA
Sarah has her first appointment with the CC pediatrician in March. But yesterday we took her for a 2nd opinion regarding the gastrology problems she had. It was very interesting to say the least. We went to Shands in Gainesville. Where I'm from in Perry- Shands is revered by all so it seemed like a good idea to take her there. When I was a little girl that's where I went for my eye condition. It's a bit of a drive and my husband hates to drive on I-75 so we went the back way. It was beautiful but it seemed we traveled for hours. It's very hard to call in to them and I tried several times because I could not read the exact time, we were supposed to be there that was written on my calendar. At one point I didn't even have cell reception. I had the appointment written down but last week when I got the confirmation call I was told to be there 15 or 30 minutes before the appointment. So I wrote on top of the original appointment. It was bugging me because I wanted to be right on time. When I finally got a person she told me my appointment was at 2;30 on MARCH 21. At that point we were 20 minutes from the office.... luckily, they fit us in because it was not our fault. I even got a confirmation call and they don't do that over a month before an appointment! Shands is great just huge. We had forgotten how difficult the process was, we remembered when we were there that we had brought Sam there when he was tiny and spent 4 hours waiting in the same office area we were at on Monday. Talk about repressed memories! We could not figure out WHY we had brough him there. Then we remembered it was for neurology and he screamed for 4 hours as we walk and rocked him. We said that day we would never go back to Shands. But since it was such a horrible memory, we still went back LOL This time there was no wait, but we did have to see another doctor not the one who specializes in her issues. This new doctor looked just like Shad and not much older than Shad. That was a little off putting but he listened looked at the records and was quite disturbed by what our daughter went through. He has some concerns and wants to do some testing in the future but right now we are just going to let her insides heal. He felt her case was very serious and was amazed by all the scar tissue that the surgeon encountered. Her insides looked as if she had had surgeries and was left with many adhesions and scar tissue. She will be returning and seeing the original doctor we were scheduled with to look into this.
Sarah was very mad at the doctor's office and would not hold my hand! Lord help me for 10 years that girl has kept her emotions inside. She has always been a little too compilate and would giggle in a nervous way if she didn't like something. She has seldom cried. It's "easy" for us but not healthy for her...well...she has found her voice and her anger! Most of it is directed at me when she has to deal with a doctor. It's kinda funny but only because I know what is going on. She finally feels safe with me so she can show her real emotion. She still nervously giggles with doctors' and nurses. But with me she yanks away from me and makes her anger sounds. But once we got back in the van she was happy especially going to her favorite restaurant Olive Garden which is about the only one we can go to now with her! She can have pasta fagioli and since they have a bar they will puree her soup. It actually lists that soup and a vegetable soup as non dairy. The doctors say her lactose intolerance is very high. So we avoid all dairy products. Now I really cook from scratch because you'd be shocked at how many foods have dairy in it. I'm happy to say she has not had one swelling episode since she has been home, This doctor (unlike all the others) feel that we have solved the problem. He did feel like there were times her intestines got "crinked" or had a volvulus because there was no reason for all the scar tissue she had inside her otherwise. He said the new extreme lactose intolerance caused "the perfect storm" which brought the malrotation to our attention. We have a theory of why she became lactose intolerant when she did but I want another doctor to confirm it first before i share it.
I love her smile and yes she finally held my hand
Thank you,
Olive Garden, for always pureeing her soups! It makes it so much easier for all of us. Every OG we've ever gone to has done this for us with no hesitation and it is greatly appreciated!
Sam and Sarah both have hearings with the Agency for Persons with Disabilities regarding their respite hours. Thankfully I have an attorney now helping us with this situation. They all three have a hearing for SSI in May. We have been contesting their decision since 2017 or so. It's been crazy! And Sam has his guardianship hearing coming up soon to for us to be appointed as his guardians since he is now an adult.
Oh gosh the funniest story..... we are just getting used to our home without nurses here 24/7. I enjoy it except I sure miss those nurses when I'm here alone! A few days ago, I was working in my office and I hear a pounding on our side door. The dog went crazy. I came running to the door yelling and asking "who is it" I mean I live in the country, our yard is fenced and gated with a lock on it. We have the No Trespassing signs up and most folks obey because they worry about country folks. Well this one didn't! When I asked who it was he said "Sheriff's Office! I looked out and it was a deputy and I could see his cruiser down the driveway. Well that scared the heck out of me I thought something had happened to one of my family members, so I shut off the alarm, put the dog in a room and ran out asking what had happened ...in my PJ's with no robe! I didn't even care I was so scared. So, he unexpectedly asked for Sam Clanton! I immediately thought someone had stolen his identify and committed a crime! Then the cop asked for me by name! That made me think someone had called HRS on me for some reason so by that time my terror had been replaced with annoyance. Then he told me he had to see Sam and read a notice to him. Well Sam was still in bed so I remembered to grab my robe and I took the cop to see Sam still a little confused. Sam was quite confused when I woke him up, LOL But he got up and sat in my lap as the officer read the whole 8 pages of the petition of Sam's guardianship to him! Sam did not object. Once that was out of the way the cop loosened up a little bit and I told him how nervous he had made me. We laughed a little but with a husband working at one prison and a son doing the law enforcement training at another one....anything could happen.
So now you are all caught up! Selah is doing great in her group home. Steve is doing great and so is Shad! Tomorrow I'm planning on going to see Selah. I hope to see the boys this weekend. Both are great about calling (usually when I'm busy doing something else) but I hear from them almost daily. Steve has gotten in the habit of calling me on his way to work and I love that even if he wakes me up:) Shad goes to work so early that he usually calls me on the way home. I love that they are living together for the next couple of months.
Can I ask you to please pray for a very special family friend who is facing a very serious health problem. He is walking through the valley. Pray for God's peace and Prescence to be so very strong and real and that every fear will vanish. It's hard to see a close friend go through such a hard time. We need a miracle for our friend.
