School!

Next Tuesday, Hannah will start Kindergarten and Kyle will start 3-year-old Pre-K at Curlew Creek Elementary School.

Kyle will be attending the Pre-K through a special education program for children with disabilities. Shortly before his 3rd birthday, Kyle was evaluated by the FDLRS (Florida Diagnostic Learning Resources System) specialists to determine his eligibility/need for special services. It was determined from the evaluations that he needs language, physical and occupational therapies, which he will receive at the school. So he will attend for the normal Pre-K hours with a mixed group of children with and without special needs and will have therapy in the classroom as well as some one-on-one therapy. There is a full-time nurse at the school who will operate his feeding pump and be on hand for any medical issues that come up. This was a relief since I was told that they would have a nurse come in just for the feedings if there wasn't one already full-time at the school. I feel much better knowing there is a nurse on premesis the entire time he's there. It was also a relief to know that Hannah and Kyle could attend the same school. They had told me that he would be going to whichever school was closest and had the services he needed. It happened that the school Hannah was assigned to did have the services Kyle needs.

I'm nervous about the start of school. I'm not sure what to expect. For one thing, I never attended public school myself. I was homeschooled from Kindergarten through high school graduation. Now I'll be sending, not one, but two kids off to school. I just hope that I can manage getting them ready and to the school on time each day. I'm sure Audrey will get into 3 times as much to make up for their absence during the mornings.

I've already bought the supplies Hannah needs for Kindergarten but they don't have a set list for Pre-K so all I know is that I need to bring a bag with his feeding pump, pediasure, diapers (they will work with him on potty training at school and we will reinforce it at home), and an emergency change of clothes. Other than that, I have no clue. I don't have any idea what his schedule will be other than when to drop him off and pick him up. I know that he'll have 180 minutes of therapies each week but I don't know when. I don't know what time his lunch will be, or nap, or anything like that. Hopefully, I'll have some questions answered at the orientation on Monday.

More Happenings...

Friday Kyle had his hospital discharge follow-up at the pediatrician's office. I was so glad to hear the doctor give him a clean bill of health (for him, at least).

Sunday morning we went to church for Easter service and Chris was in charge of special effects. He got to make it rain indoors. After church, the kids played on the playground and Chris hurried home to hide Easter eggs. All the excitement must have been too much for Hannah. She threw up on herself, the chair and Kyle's leg. No fever and she was fine after that, though. So much for the photo op with all three kids dressed up so nice.

Before going to bed, Hannah mentioned that her ear hurt again so she stayed home from pre-K this morning and I got her an appointment at the pediatrician's office. She was a bit apprehensive and wanted me to tell the doctor not to give her any shots this time. The doctor was surprised to see us yet again but she said that Hannah's ear is fine. She said that her ear might have just popped or something.

Audrey's follow-up appointment is Friday so we'll be back again to the pediatrician's office. We should really just move in.

After Hannah's appointment, we picked up Kyle from PPEC to bring him to his occupational therapy appointment. We're trying to get his schedule back to normal. When we got in the car from PPEC, I asked Kyle if he had been a good boy at daycare and he grinned real big and said, "Nooo".

When the therapist, Jen, called Kyle back he started crying and screaming like he'd been fatally wounded so I went back with him and both girls came with me. The therapy session started the worst it's ever been with the screaming but eventually he started having fun with Hannah joining in. It ended up being one of the most progressive sessions he's ever had! He reached into the bucket of pasta (to work on his texture aversions) and easily pulled out blocks and even dug through for pennies without any fits about the texture on his hands. Then, although he screamed at first about being put on the log swing, after Hannah got on with him, he started having fun and one time even crashed on the large crash cushions of his own effort and even climbed across three crash cushions (kind of like crawling over lumpy foam) to "catch Hannah". Normally, he would cry and fight about even one crash cushion!

On the way out, they gave Kyle a "Woody" sticker (from the movie Toy Story). He's been a little bit obsessed with Toy Story lately. So on the way home, I asked him, "What does Woody say?" and he said, "Reach for the sky!" just like Woody says it in the movie. So I said, "What else does Woody say?" and he said, "Somebody poisoned the water hole!" (again, just like in the movie). One more time, he answered, "Ev-ery-thing" (like near the end of the movie). It was just so cute!

Audrey at the Doctor's

Well, this morning Audrey wasn't feeling so good. She was congested, boogery and had a fever (101F). I gave her a dose of Tylenol but a couple of hours later, she was not only running a fever again (103F), but she was shivering - chattery gums (she only has one tooth so far) and everything. So I brought her to the pediatrician. By the time we got there, she had stopped shivering but she still had a fever. They did a finger prick and found out she had a high white blood cell (WBC) count, which means she's fighting some kind of infection. She had no sign of any ear infections so they tried to get a urine sample to check for a urinary tract infection but she wasn't so cooperative with that. They are treating it as a general infection. They gave her a shot and a prescription for Amoxicillan. The pediatrician did mention that she was a very happy baby for being so sick. She was giggling and playing in spite of it all.

We'll be going back to the pediatrician tomorrow morning for Kyle's hospital discharge follow-up appointment and they will be giving him another immunization against pneumonia. He's already had one but the immunology work-up they did on him came up negative for immunity so they're going to try again. Considering he had pneumonia twice last year and once this year already, it would be nice if the vaccine took this time.

Kyle Home

They discharged Kyle yesterday and I took him home after an interview for an echo tech position. Kyle's now on a couple of cardiac meds as a precaution and we have Orapred (an oral steroid) to give him in case of emergency.

Out of ICU... Still at the Hospital

Kyle's been moved to the 3rd floor which means he's close to going home but it means a lot less attention and a lot louder alarms until then. But at least we got the bed close to the bathroom (the coveted spot in any room) and there's room for a sleep chair. I'll just have to beg for a blanket (good thing I brought the pillow from downstairs, at least). Hopefully tomorrow he'll be able to go home. That actually works out well because that means that I can have my interview and then just bring Kyle home afterward.

Off Oxygen

Kyle was taken off oxygen this morning and is doing excellent. The doctors say that he'll probably move upstairs (out of the ICU) today and if he stays off oxygen, he'll probably go home tomorrow!

He's in an excellent mood today - playing with the toys and chattering up a storm!

Kyle Update

Kyle is off pretty much all of the medications and they are starting to wean him off the oxygen. They have him down to 1 liter of oxygen and we'll see how well he does on that.

The pulmonologist has mentioned the possibility of giving Kyle a prescription for an oral steroid for use if he gets like this again so that he gets it immediately rather than having to go through the ER process first. The hope is that if he gets the steroid right away, there won't be as much damage to undo.

The cardiologist mentioned the possibility of starting him back on daily cardiac medications. His heart is okay now but the continuous stress on the heart from all the lung issues may cause problems in the long run so he may need the medications as a preventative measure.

Meanwhile, I got a call from the head echo tech and I have an interview scheduled for Tuesday afternoon. Yay!