Category Archives: Doctor
It was time for Magpie’s checkup and shots for sisters doggie Max so we headed to the vet yesterday. They entire office staff is still so excited to see her everytime we go in and this time we talked about how we couldn’t believe it has been almost two years since we almost lost her to the snail bate. It’s because of their quick thinking and skills that we still have her and so we will go there forever now!
Both dogs did great with their shots and got clean bills of health. Yay!
It’s been a rough couple of days at home for Deeds. He was even grumpy at the neurologist appointment at the children’s hospital today. He usually loves it there and wants to ride the elevator over and over but today he didn’t even want to ride once.
The the doctors are still trying to find the best seizure medication balance and since the past few weeks he’s been having what appears to be complex partial seizures along with a Tonic-clonic Seizure. His dosage has been increased again and we will see if we can find the right balance this time around. Our doctor said it may take some time to find the right balance since she started him on a very low dose. I’d rather have it be a low dose and work up than over dose him with medications that might slow him down.
We decided to decorate for Christmas last night to calm him down when he was having a rough night. He LOVES Christmas lights and so we got out our little tree and let the kids decorate it. The trip to get Magpie cost more than expected and add on the work Jeremy and I missed we believe we will be sticking a big red bow on Magpie to celebrate Christmas morning (and maybe next Christmas too…ha ha). Thank goodness the kids are young because I went through their toys and pulled some out they haven’t touched for a while and we’re going to wrap them up for them to open. I thought it was a great idea someone gave me! I am actually thinking of trying to find some other families that want to do the same thing so our kids will all have new-to-them toys on Christmas morning.
Here is a link for the little commercial that is airing for Deeds and Magpie’s story that will be on TV tomorrow night.
Yesterday Deeds, Gwen and I went to get our flu shots. Thanks to heart issues with me I tend to catch everything that goes around so we all try to stay on top of things.
I was brave and went first. I laughed when I was poked and made a big fuss over my awesome band-aid. Given my prior fear of needles I was quite proud of myself.
Deeds went next and insisted he get it in his little arm like mom. He made a face when he got stuck but didn’t cry or call out at all. He was also very thrilled about the band-aid. He helped little sister get on the table and told her “It’s your turn Gwenny.”
Even little Gwen did so well. She did yell when she got stuck, to which Deeds laughed so she started to laugh too. Not one tear was shed by any of us. The nurse was so thrilled that they got their shots so well that she gave them each a sucker AND a toy.
Since it’s been a long hard week with Deeds and his autism I was thrilled he did so well yesterday.
Today Deeds neurologist at the children’s hospital let us know that our little man has Epilepsy since the seizures seem to be sticking around. The doctor decided it is time to start medication slowly to see if they can control his seizures. They aren’t that frequent right now but since last November when they started they are gradually increasing. The doctor talked to me for a long time about medication before I felt comfortable with options she gave us. The doctor was THRILLED when she heard about the service dog being trained in seizure alert.
I’m confused and slightly overwhelmed with yet another diagnosis. The list is sure growing, good news is that Deeds is doing really well with the autism so I guess bring it on. Together we can handle anything.
Today we took Deeds into get some allergy testing done. There was some concern of a food allergy so we ran a gauntlet of tests to check anything and everything out. We were thrilled to find out he has no food, mold or weed allergies. He is officially allergic to:
- Trees – Maple, Box Elder, Acacia, Fremont Cottonwood, Olive, Siberian Elm, Spring Birch, Western Juniper, Western Sycamore, Western White Oak, and White Mulberry.
- Grasses – Kentucky Blue/June, Meadow Fescue, Orchard Perennial, Rye, Redtop, Sweet Vernal, Timothy, and Saltgrass.
I am writing this blog post from the back of a symposium on Autism. Over the past couple weeks I have gotten to go to so many things like this and I am happy when I walk away with any new little insights. A lot of it is stuff I have already heard but I really love the genetic side of these speakers. I’m a sucker for the science behind it all.
I am on call for work so I am hoping I don’t get called in and can hear a few of the speakers. I will take dubious notes and this next week I hope to finally post all the fun things I’ve gotten to learn about. My favorite so far was a lecture given by Dr. Daniel J. Fairbanks on genetics. He sculpted a bust of his son while lecturing and it was just awesome. He talked about the complexity and promise there is in the field of Genetics and Autism.
I’ll keep you all updated…till then, this is busy mommy signing off.
At home recently we have seen some regression from Deeds with his Autism. Meltdowns that had all but disappeared are happening multiple times a day and stimming repetitive motions are running amuck again. Yesterday we had parent teacher conference with his teacher. I wasn’t sure what to expect, but I wasn’t expecting her to tell me how perfect he has been at school. I only guessed that as bad as he has been at home, school would be worse.
She reassured us that he was in the “honeymoon” stage of pre-k, and it was normal for behaviors at home to get worse since they can be on their best behavior at school. It’s good to know that he is enjoying school.
Today we had a check up at the burn clinic in Salt Lake. The drive is just under an hour but by the time we get to the hospital, find somewhere to park and get into register we are all very tired. Today Deeds screamed at the doctor anytime he tried to get a good look or feel of the burn and was just bursting with energy, stimming and jumping all over the place. Jeremy had to make a quick stop and we were going to meet him in the lobby. Deeds, Gwen and I sat in what I thought was a little alcove. I didn’t know it opened up on one side, just enough that Deeds could slip through while I was putting a shoe on Gwen and take off. After grabbing Gwen with one arm and the stroller with the other I sprinted after him. Only to have him bolt less than a minute later. This time it took longer to find him and he was almost out the door. I finally wrangled him into a corner and blocked his way with my leg and a chair. He started to hit his head on the wall. A behavior that was common when he was a baby but we haven’t seen in a long time. I absent-mindedly commented to Gwen that “Autism is not our friend today.” and a woman across from me gasped like I had stabbed someone.
Lucky for all of us Daddy showed up right then and took charge of Deeds. The only other incident we had on the way out was when he wasn’t paying attention and walked into the revolving door. Situations just like today are why we are getting the service dog. The hospital lobby was very crowded today and with Deeds getting so much faster as he grows up it scares me more than I can express that he will get hurt or lost. October and the service dog training can’t get here soon enough.
On Thursday we took JD back to the burn unit to check on how his face is healing. It started off a big shaky after we arrived a little late for our 3 p.m. appointment, but as we were waiting to check-in we got a phone call that said the appointment was at 2:30 even though the card I had said 3 p.m. as did the reminder in the mail. As we walk in they were talking about how they were going to head home for the day. That would have sucked since we drove just under an hour to get there.
His hand is getting much better and in a few days he can most likely stop wearing his hand bandage. As for his face the doctors said it is looking very good and since his nose, check, chin and most of his fore head is now pink and not scarred we are applying lotion to that portion when we clean his face. Those areas are still very pink and do not have pigment yet which means we have to be very careful to not get his face sunburned. He is fair skinned as it is– as is me and Bobbie — so we need to start using sunscreen when he is outside and putting on hats once his forehead and scalp get better.
One amazing thing is that the nurse who cleaned his face was able to do so without JD moving, screaming or having to hold his head still. Well, I think for a moment I had to hold his head, but overall he just sat on my lap as the nurse cleaned his scalp and forehead. The doctors are not sure if he will scar on his forehead or not, but there could be discoloration if he gets sunburned before the pigment comes in.
Flash forward to tonight and we had to pin him down to try to clean his face. His face is getting way better and the change from yesterday to today is quite dramatic as the left part of his forehead is healing very well. The middle section is very tender and bleeds easily but it is getting smaller, so I guess that is good.
Here are pictures from yesterday:
Here is one from today:
The one from today is hard to tell how much better it is, but if you look at the center of his forehead it is getting smaller. We go back to the burn unit next week and hopefully we see much more improvement and if we are lucky his scalp and forehead will be much better and he can start wearing hats.
The girl holding him in the picture is his cousin Hannah who is in town for a tryout at the BYU Dance Academy (I think that is the right name) so they are staying with us. JD very much loves Hannah as he frequently asks to talk to her on the computer, so we pull open the Mac and we video chat a few times a month with Hannah, her mom and JD’s grandma. He really enjoys that, so it is good to have them here for a few days.
Of course they brought him a ton of new toys which he played with tonight ranging from new chalk to use on his easel, a memory game and Thomas the pasta which he wanted to cook and make some mac n’ cheese. Plus, he kept telling Hannah that Lightning McQueen pasta fell on his head and burned him, so sad.
The great news that he is doing much better and is acting more like his self, and I can not wait until we only need to apply sun screen or lotion on his face instead of holding him down and scrubbing his face and scalp clean.
Today I took Deeds in for his 3 year well check. It was a very long wait to see the doctor but the kids were actually fantastic. I haven’t seen Deeds so happy in a long time. He was even up to his good old running in circles self. I even took a little video and some pictures while we were waiting to show how well he was doing. 🙂
The doctor showed some concern for the burns on his forehead and scalp, said they started to show signs of infection and to watch him closely until our next burn clinic appointment on Thursday. Doc also mentioned that he wanted to make sure that Deeds was eating again because he’s had a weight drop, and he’s so skinny to begin with. His height isn’t slowing down at all and he is around the 110th percentile for his age.
Tonight’s cleaning was a nightmare. The worst we’ve had in days. I was being so gentle and when we got to the areas of his scalp and forehead all of a sudden the skin came loose and it started to bleed a lot. It shocked Jeremy and I. I was even using the rag a lot more gently than normal because we were trying to see if he would hold still without being restrained. Deeds started to scream and thrash while I tried to stop the bleeding. Once we finally got it stopped and cleaned up we had to take a deep breath. Which instantly made me sob. This whole process has been very hard, and today had finally been a great day with the healing and Deeds attitude. It was terrible to have such a set back. We are hoping that tomorrow when he gets up it is looking better. If not I’ll be calling the burn unit again. We put a lot of the antibiotic ointment they gave us on it to hopefully protect the new wounded skin.
Tomorrow is just another day… and we can only hope it’s a great one…