July Update

It has been a super busy month! It started out with me catching a cold. Luckily, no one else caught it. The girls had 2 weeks of evening swim lessons, then one week of vacation bible school, followed by one week of soccer camp for K2 & K3.

It was an uneventful month for Kaiden as far as any appointments go. He has continued to make small progresses. He is eating third foods very well and will eat some table foods (applesauce, oatmeal, berries) as long as they are mashed. I've also started making my own baby food in the mini food processor. Baby food gets expensive when you can go through 6 jars a day! We are trying the sippy cup now as well, with and without the spout. He enjoys apple juice but he doesn't like getting it from the sippy cup. He is also starting to not like the bottle as much. This makes getting fluids into him difficult. He is becoming more active as well. Sitting up unassisted for short periods of time as well as rolling all around the living room floor. He will roll over to get to his bottle when he is hungry but he doesn't seem to purposefully roll over for anything else.

We are looking forward to the genetics appointment next week.

MRI & CAT Scan Results

I received phone calls this week from both Kaiden's neurologist and neurosurgeon. Both tests came back perfectly normal. Praise the Lord!

His neurosurgeon said that we could still try a re-shaping helmet but he did not recommend it. We agreed and so are not going to do it. With Kaiden still not having full neck strength, we feel that the helmet could potentially do more harm than good. It would be added weight on his head and it probably would not do any noticeable re-shaping.

His neurologist said that now we need to wait for Dr. Bawle to run the CGH blood test to tell us if he had any chromosomal abnormalities. We don't see Dr. Bawle until August.

MRI & Cat Scan

Today was our second attempt at Kaiden's MRI. This time it was a success. They had to use full anesthesia so we were confident that it would work this time. St. John was also able to get his CAT scan done immediately following while still under anesthesia. This is why I love that hospital so much. They are always very accommodating. They normally do CAT scans on Wednesday but even with only one day's notice, they were able to work it out so he wouldn't have to go in again and be put under for a second time. We expect to hear from his neurologist with the results after the holiday week-end. We had to do the CAT scan first so they gave us the paperwork for both that and the MRI so that he could be moved from one area to the next without any interruptions. When the CAT scan was done and they moved us down to the MRI waiting room, we took our paperwork to the desk. They had saved the paperwork from last month! The receptionist was so upset that they had us complete it again (it was really no big deal, it was only one sheet of paper double sided) that she gave us each a $5 credit to the cafe to get breakfast while we waited for the MRI to be done which takes longer than the CAT scan. We only sat for about 5 minutes once we got back from the cafe and Kaiden was done. We were at the hospital for only a total of about 2 hours.

MRI. Fail.

Today Kaiden was scheduled for his brain MRI. Because we had to be at the hospital one hour before the appointment which meant 7:30 am, the girls had a sleep-over at Nanu & Papa's so they didn't have to get up at 6:00 am. They always love those!

We arrived promptly at 7:30 am to the hospital. Of course we had to do paperwork and answer all of the same questions that we had to answer on the telephone twice before (once when scheduling and then again yesterday). We had to accomplish this with a screaming hungry baby because we couldn't feed him before the sedation.

Then the nurses took us back to a room to take his vitals. It was a slow day for them today apparently because for the one hour that we had to sit in the room, we were able to hear very clearly all of the drama surrounding one nurse's pending wedding as well as the staff opinion's on the Red Wings and GM bankruptcy.

After the vitals were done the nurses called the physician in to exam him to make sure he was OK to take the sedative. They said it should take 15 minutes. He was given chlorate hydrate which is supposed to make him just sleepy. Then we were allowed to give him a bottle. They came back after 15 minutes to find him playing with his Daddy. They came back another 15 minutes later to find the same thing. Then they gave him another half dose and said this would surely put him out. Another 15 minutes later and the same thing. He was acting droggy but not ready to go to sleep. I climbed in bed with him because that is how he goes to bed at night, and covered us up to try to darken the room so he'd know it was bedtime. When the nurses saw this, they said they could take us to a dark room if that would help. Off to the waiting room we went. As soon as they left and shut the door, I laid him on the floor on his blanket. It was pure darkness in that room. He was asleep within 5 minutes.

Pete went to get the nurse to take him for the MRI now. Hoping he would stay asleep for the 20 minutes that they needed. Within about 10 minutes I told Pete he was awake because I could hear him crying. Sure enough, 5 minutes later and the nurses were back with him. They needed just 6 more minutes but he wasn't having it.

I thought for sure he'd fall asleep on the way home but he didn't. He stayed awake and playful until his normal naptime. Then he took a nice long 2.5 hour nap.

Now we go back on July 2 to try again. This time they will perform full sedation so that they are sure he is sound asleep for the entire test. More waiting.

Second Therapy Visit

Today was Kaiden's second visit to therapy. He had 30 mins with OT followed by 30 mins with PT. Luckily he fell asleep early today while playing so I didn't have to wake him up to go. He had been up for 2 hours already and we went for a walk so I was a bit worried that he wouldn't do so well after all of that fresh air. But boy was I surprised. Today was a big milestone for us. I felt like a first time Mom all over again. During his OT visit he wanted to suck his finger often so the OT said, why don't' we try putting food on it and see how it goes. It was going well so she said, let's push it and see how it goes. She pulled his finger out and put food into his mouth on a spoon on the inside of his cheek between his cheek and gums. And he swallowed! She kept this up for about a quarter of a jar of bananas and then let me do another quarter of a jar. At first he would suck his finger after his bite, I think to help swallow the food. But eventually he caught on and stopped doing that. He even opened up his mouth when we would bring the spoon within his eyesight! I brought the jar home and finished it up with him. Then tonight, just to make sure it wasn't a fluke, I tried to feed him a jar of peas. I always started the girls with vegetables since they aren't sweet so they wouldn't refuse them later. We tried all of the first foods in his bottles without any troubles so I thought he'd take the peas on a spoon. Nope. He completely refused them. Then I tried sweet potatoes and he ate the whole jar again! I think we are on to something now. Here's a short video that K2 shot of him eating.



After OT he had PT. He wasn't interested in anything she wanted to do with him. She had to set him down twice because he got so mad. We know that he has to be pushed but when he starts screaming, there is no point in trying to push him any further. I am hoping that in the Fall we can move his times to the morning when he is more engaging.

ENT Visit

This afternoon Kaiden has his appointment with the Pediatric ENT, Dr. Madgy at Chilren's Hospital downtown. I had planned to go to his office in Clinton Township by myself but the office needed to re-scheduled and I was able to get into the downtown office quicker. Since it was in the afternoon on a Friday when Pete normally works from home, I asked him to come with me. I've never been to this hospital so I felt more comfortable not going by myself.

Our appointment was for 1:10. We didn't get seen until 2:15 pm. Then we were first seen by a resident. I'm usually understanding when it comes to seeing residents since I worked at St. John's and know that they have to learn somehow. However, after waiting for well over 1 hour to see the physician, I was less than patient. I was heating up thinking that we weren't going to see Madgy when he did finally come in. Apparently the resident does the in-take interview and then Madgy takes over.

As Kaiden's pediatrician suspected, Madgy 'wasn't impressed' with his tongue tie. That was what he said. Madgy said that it was minor and that it could or could not help him if they clipped it. Then we were off to see the audiologist to repeat the two hearing tests that the audiologist at Early On had already done. Kaiden 'failed' this hearing test. He is unresponsive and doesn't recognize his name so we don't think his is deaf, but I do think he may have some hearing loss. Pete thinks his hearing is fine. The audiologist concluded as did the other one that Kaiden would need a Auditory Brainstem Response (ABR) test done and he'd need to be sedated for it since he needed to be quiet. An ABR test is used for hearing and brain (neurological) functioning. The ABR test involves attaching electrodes to the head to record electrical activity from the auditory nerve (the hearing nerve) and other parts of the brain. I asked if this could be done at St. John's when he has his MRI sine he has to be sedated for that. The audiologist called over to St. John's to inquire but she said that the test that they do isn't as extensive as the one that they do at Children's Hospital. They are also very booked up for this test and the first opening isn't until sometime in July. I'm currently on the waiting list for when that schedule opens up to be put on.

Madgy said we'll address the tongue tie after we come back to see him after the ABR. If it was one of the girls, I'd let it wait. But if there is any chance that this could in anyway impact Kaiden in the future, I just want it taken care of now. I don't want it to be an issue or non-issue later down the road.

MISD Early On Meeting

This after was our first team meeting with Kaiden's parent coordinator, occupational therapist, and physical therapist. In this meeting, we laid out his main goal for each area of development, and then 3 sub-goals for those. The meeting lasted for about an hour. I was very pleased with the goals outlined. All of the ladies that I met seemed to really care about Kaiden's development.

He will start therapy next week, twice per week, for one hour each day. Once they receive the reports from his other doctors (neuro, optho, & ENT) then he may qualify for more services. For right now though, I think this is a good place to start.

Therapy is suppose to occur in his 'natural environment', home, but they feel that he'll progress better at the center with the equipment that they have there. This means they will pay me mileage reimbursement. Seems kind of silly to me, that they would pay my mileage to get there for free services, but that's the government for you.