I've had my hands full the last couple of weeks. Overall, Ian is doing well. He's a bit behind but doesn't seem that far considering he was a month early and all that he's been through. Adjusted age, he's really only 2 months now but birth age he turned 3 months on the 19th. He's talking to us all (cooing) and finally looking us in the eye more often. He tracks but not all the time. Can hold a rattle in his hand for a bit before letting go and hits at the hanging toys on his floor "gym". His big noggin is not even close to being held up by his little neck but we're working on that with OT & PT and on our own in between visits.
We've found a fabulous nurse to help us out. She's working with us 4 hours a day during the week which allows me to pick up Lila from preschool and spend some time with her, often times doing errands but sometimes going to the park or on a walk (or for a scoot) or just having a tea party at home while Ian gets all of stuff done, treatments/meds/etc.
The whole coordination with insurance is just about driving me nuts! Especially with the meds. I ran out of one on Sunday which totally freaked me out. I had put it in to the pharmacy at least 2 weeks ago and had been on the phone with them, the insurance and the nurse at Ian's Pulmonologist about 15 times before it finally was approved. That was late Friday afternoon and I totally spaced on picking it up on Saturday. Then they are giving us trouble about refilling another inhalant because another pharmacy had put the wrong instructions on it, once a day instead of twice as it's supposed to be given. It's crazy how much phone work needs to be done to get things through.
I'm just about as tired as I can be. We finally moved Ian into his own room last night. Mike's suggestion. He's been sleeping in the room with me in the co-sleeper next to my bed waking me up every hour since he's been home. I'm about out of my mind with it all and no sleep. Mike watched him one night in his room and he didn't seem to wake as often so we'll try it again tonight.
Lila is so adorable but driving me nuts! She loves to pack, have tea parties and picnics as well as ride on the sleep train, all of which entail dragging every toy with small pieces out and putting it into a box, bag or suitcase. Then she lays all the things out on a blanket or table. I just can't keep up with it all. Mike had a fun putting away dance in her bedroom tonight. How adorable was that! He put on some music, because she loves to dance so much, and made it a dance clean-up party.
Ian is continuing to nurse although off and on being fussy while doing it. He goes from nursing fabulously with no gagging or pulling off and screaming to the alt. It's such a struggle to figure out if I should continue trying when he's so fussy or just let it be. If I let it be, that means I have to gavage him and possibly pump myself. Sometimes if I keep trying, he'll end up feeding for a while and other times I just end up giving up and being so pushed to the limit by the time I do. This is usually the time Lila is needing the most attention, I realized I'm late with his meds and his breathing treatment, and we have to get out the door for something ;-)
Did a sleep study two weekends ago. What a miserable experience that was! Poor little guy had probs pasted all over his head and face, monitors pasted to his chest and straps wrapped around his chest and waist. And then was supposed to sleep. I can't believe he did but I sure didn't! Still don't know the results of that.
We have been to UCLA so often in the past few weeks the guy at the pediatric clinic knows us by name, between 2-3 times a week. This week is a slow one, hopefully. Last Friday went for another head ultrasound and met with the Neurosurgeon for a minute. He had an emergency surgery so couldn't spend a lot of time with us. He needed to compare the ultrasounds to figure out where we are with needing to move forward on the shunt or not. I don't have a really good feeling about it because his fontanelle seems more full than it should be. Dr. L also thought so but didn't want to rush into anything. Ian's been more fussy lately, which also makes me wonder. We'll see what Dr. L says when he calls me back tomorrow.
I've been looking into Cranial Sacral Therapy but not sure what I really think about it. Mike checked it out and is more skeptical. I've been putting calls into a SM Osteopath doctor whom Dr. Fryman referred me to. She's supposedly the "queen" Osteopath in San Diego whom we have an appointment with in August.
Overall, we're just hanging in by a string. I'm not crying as much as before but still have plenty of moments. I'm overwhelmed by the present and even more by what the future might hold for our little guy. It just makes me sad overall. I do remain hopeful but it's probably just more difficult to do on no sleep.
Lila's preschool summer school is over at the end of the week. We've got her signed up for a local summer camp which I'm really hoping we both like. It'll be good for her to have some stimulation outside of the home and I'll have a break to care for Ian on my own for a bit in the morning. I hate to have her away but I really believe it's good for both of us for at least a couple of months.
That's all I've got for now. I need to get to bed. As it is so often, so much is still unknown... which is a good and bad thing.
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