Grandparents, OT, and Nutritionist Visits

 The pace of our life is picking up quickly. So this is how it will be until we don't have kids in the house anymore, huh? I can't even imagine more than one.... Ha!

Aven has an appointment with the nutritionist on Monday. This requires me to fill out a daily food log for 3 days. Nothing like anxiety over what your child is eating when you see their a food log. I'm certain I'll be told several things are bad, or she should be eating more of _____. We'll see. Daryl and I talked about the need to even see the nutritionist, now that she's gaining weight, but our nurse was very insistent, so we'll see how it goes.

Daryl's parents were here this past week. We really enjoyed that, especially Aven. Okay, I probably enjoyed it a little bit more because I could actually fix dinner at a normal time since they entertained her. We tried to squeeze in as much fun stuff as possible over the 6 short days they were here.

This was our second time visiting Fortress of the Bear. We enjoyed it more this time, especially Aven I'm sure - since she was just a tiny nugget last time, not even aware of her surroundings. 

There were a couple gorgeous days, so we made sure to enjoy them! And of course Daryl and I had to go out on a fancy-schmancy date with the free babysitting!

I love date nights with this guy!

And then on Sunday Aven was dedicated at our church. I'm so glad we could do it when Daryl's parents were here. Aven was just perfect - the pastor took her from Daryl and held her to present to the church, and as soon as he said her name she waved at everyone. It was adorable.

Bonus: her weight gain has helped her fit in her Easter dress better! (The 9 month size now just about fits her at 11 months.)

The OT came again on Wednesday at we signed all the papers for Aven's IFSP. It was familiar to me, having taught special ed, but not completely the same as the paperwork I had to do as a teacher. They were explaining things like IDEA and FAPE and I was glad I understood what they were talking about! The OT had come up with several goals for Aven over the next 6 months to 1 year, including crawling, walking, pulling up to stand, stacking and sorting toys, and pointing. She said that Aven is at 50% of where she should be for gross motor skills, and about 75% for fine motor skills. This puts her in the section of kids with the most need, apparently. They said that babies catch up so quick with some work, though, and within 6 months to a year she should be doing all the things normal for her age. Yay! It was quite startling to hear that she is so far behind ... she's doing things that a 6 month old should be doing. Just in the last month or so has she started rolling over on purpose (and being able to roll back if she wants to). She can sit if you put her in the position, and can pull up from the floor to sitting or standing with help. For so long I didn't want to be concerned about it and reminded myself that babies all do things on their own schedule, but I'm glad that she's getting help and will hopefully be able to catch up. 

When Grandma and Grandpa Halsey were here she got early birthday presents from them. She might need to grow a little bit for the wagon, but she loves it!

I can't believe she's 11 months old today and it's time to start getting things ready for her birthday party! I swear, she's not that old yet! 

Father's Day and everything else I know about Aven

Father's Day was beautiful and sunny and WARM! It was somewhere in the 70s, and we soaked up the sun and had fun SWEATING. 

Get this baby some Vitamin D! See those little rolls on her legs? She's gaining weight! We are thrilled about that.

We all really enjoyed our day. Daryl and I listened to a message online from our old church, Eastlake, in Lawrence while we sat out on a blanket in the sun. That was fun until a bird flew over and unloaded on us. We changed and went back outside but I was paranoid the rest of the day that it would happen again. I reminded myself that it was probably like lighting - it wouldn't happen again in the same spot. I can't speak from personal experience about lighting, but I'm pleased to say the birds crapped elsewhere for the rest of the day.

All good moms let their kids eat sunscreen, right? It doubles the protection, I'm sure.

Aven had another weight checkup last Friday at our doctor here in town. She gained a pound a grew an inch since her 9 month checkup the month before! That is really an answer to prayer, especially after this and this. 

The same day, we received a call from the GI specialist we saw at Children's. He said, basically, there is nothing wrong with her, at least from a GI standpoint. The X-rays didn't show rickets, which is good, and the urine test he did there showed no reducing substances (which is what showed up when they tested here in Sitka, which led us all to believe initially that it was something metabolic), so that's also good. He recommended the same approach as the endocrine doctor did - just make sure she is getting extra calories by putting butter or oil in her food.

 Okay, I just realized that I never mentioned what the endocrine specialist said when I spoke with her on the phone. She said that Aven's blood tests simply showed a Vitamin D deficiency, and prescribed Vitamin D for her. She would like to see her again in 4 months, but otherwise just said to give her extra calories.

I am so thankful for all the prayers from everyone, and know that they are helping Aven grow stronger. She is still far behind where she should be for her age, both in weight and some developmental milestones, but I can see her growing! She has also started seeing an OT (Occupational Therapist) as recommended by our doctor here, so hopefully we will get some good information and exercises we can do with her, and set goals that she can reach.

I know that all of these things we're going through are tiny, compared to the big picture, and compared to other families and their struggles. But what I've learned from my life is that everything is big in its own way. I see other people dealing with things with their kids and think, "I'm not strong enough to do what they're doing. How are they staying sane through all this?" But I know other people with kids who are excelling in everything they do, and are incredibly advanced, so maybe they're looking at me and wondering the same thing? I don't know, because I'm not in their shoes, either.

It seems that most lessons I learn are about how I should not be a judgey-mcjudgerson. It's interesting how I keep having to learn that over and over. Maybe I should listen better. I'm just thankful that Jesus has patience as He keeps teaching me these things. 

I have so much more that I want to say, but I don't really know how to say it. Maybe it would sound like complaining - how I wish Aven would meet her milestones and crawl, or pull herself up, or grow more teeth so she could eat food like a normal almost-one-year-old. I could reveal my self-doubts, like is it my fault that she has poor muscle tone and isn't crawling yet because I hold her too much? She's my first little baby to cuddle, so maybe that would make sense. Or my fear that I didn't feed her or nurse her enough and that's why she lost weight. I should have noticed something was happening. Was I starving her because I was trying to feed her healthy foods? Maybe I should have listened to everyone who was telling me to feed her more, maybe they were all right. I could complain about how much it bothers me when people comment on how little/skinny/tiny/petite she is. I know it's true, and I love her however she looks, and they don't know that it bothers me. I don't know why she's that way, she just is right now. Then there are those people who give me that look, that "you don't know what you're wishing for" look when I say she's not crawling yet and tell me to just wait, that it'll happen before I know it and I'll wish she was tiny and immobile again. But they don't understand that I just want to know that she CAN crawl, that she will be able to accomplish these things.

In all that rambling is honesty, whether it makes sense or not. I try to be open and realistic on this blog, which is helpful for me and I hope others. And now I'm at the end of this post, and I don't have any spectacular life lessons or specific biblical references about what Jesus has taught me through all this, other than that I don't know what I'm doing and even when I think I do, I still don't. But after all she's not really mine, she's His, and for whatever reason He's blessed us with her for this time. 

And I'm so thankful for that. Because I love this little face. And even though this is just her eyes, I think this photo is simply adorable.

But I might be biased.

Update on Aven

And we're back in Sitka!

That was a whirlwind trip. We're kind of disappointed to be back here and not know anything more than we did when we left.

I'm going to start by running through the events of the trip, then I'll add more of my personal reactions to everything at the end.

Sunday: We flew out of Sitka at 6 am, arrived in Seattle, picked up the rental car, checked into the hotel, attempted to take a nap (failed), walked to the grocery store to get food, ate dinner, and went to bed. Really all very boring stuff. We had wanted to go do something but were all too tired from the trip.

Monday: Walked to Children's Hospital, which was directly across the street from our hotel. Very convenient. That place is huge! It's also built on a hill, which makes it very confusing to get around. We had to take specific elevators to get to the right floor. Finally we found the GI department, checked in, and waited for our first appointment with Dr. Fahl. 

We didn't wait long, then they called us back. I filled out paperwork while Daryl and one of the nurses took Aven to get weighed, measured, etc. Then we waited for the doctor. He and his two nurses came in and talked to us. He asked us all sorts of questions about our family, the pregnancy, and Aven and her eating patterns. Then he examined her (which was really a quick look-over) and attempted to get a stool sample, which didn't happen. I asked about the metabolic issue that our doctor in Sitka had mentioned, but Dr. Fahl said he hadn't seen anything on her paperwork they sent down that indicated that. I said it was in her urine, and they even called Sitka to confirm they had the right reports, which they did, but he said he still didn't see anything that indicated that. I wanted to tell him the specific name of what they'd found, but couldn't remember it at the time. If I had been able to, things might have been different.

He told us that from what we said and from examining her, he didn't think it was a GI problem and wanted us to see and endocrinologist. So he ran down the hall to their department and was able to get us an appointment for that afternoon. That was a huge relief, because when he was gone his nurse told us that what the endocrine department usually liked to do was prove that the child wasn't gaining weight before they saw them, which would mean admitting her to the hospital, inserting a feeding tube through her nose and teaching us how to use it, then sending us home to come back in a few weeks. So we were happy to have an appointment that afternoon!

Still Monday: After lunch and a nap, we were back at the hospital to see the endocrine doctor, Dr. Motaghedi. She asked us many of the same questions about our family history, Aven's growth and eating patterns/issues, and our health. She then showed us her weight and height charts, and how Aven's weight had dropped off first, and now her height was dropping (not that she was getting shorter, but on the chart for her age, it had dropped on the percentile curves - hopefully that makes sense). She said that the labs they did here in Sitka showed an elevated level of ___ (something I can't remember - medical people, any ideas?) which could indicate a vitamin D deficiency, which could explain her height not changing, but not her weight. Dr. Motaghedi said she wasn't sure what was causing her weight loss/poor weight gain. She sent us to the lab to get blood drawn, and said we should have the results of that by next week some time.

Don't worry, this is still Monday: We went to the lab where they had us wait until the orders came through from the doctor (then forgot to check for the orders until I went up and asked about it, keeping us there for an extra half hour). In the lab room there was a TV which kept Aven quite distracted until the first poke. I don't know how anyone gets blood out of tiny baby veins anyway, but maybe at a children's hospital I figured they would be better at it. Nope, not really. The lab tech stuck her left arm first and dug around for awhile, even managing to poke the needle back out through the skin, then gave up and moved to her right arm. She kept the needle under her skin this time but still couldn't get anything. She went to get another lab tech, who came in and tried a vein in her foot, finally getting what they needed. All this time, of course, Aven was screaming and looking at us like we'd lost our minds - why wouldn't we just pick her up? Why were we letting this happen to her? Daryl and I both felt sick to our stomachs.  As soon as it was over she was happy, though. Sweet baby girl.

Oh hey Monday, you're still here: Back at the hotel that night, Daryl and I talked about everything that had happened. We both agreed that we were disappointed that we didn't get any answers yet about what was going on. We were both frustrated that neither of the doctors seemed to have any idea as to what could be causing her weight issues. I continued to be bothered by the fact that Dr. Fahl didn't mention anything about it being a metabolic issue, as our doctor in Sitka had indicated. (After we left the hospital I had called Kat, our nurse in Sitka, and asked her what they had found in her urine. She said it was reducing substances.) We decided that it wouldn't hurt to call Dr. Fahl again the next morning and ask what he thought about the reducing substances.

Tuesday: We enjoyed breakfast that morning and I called the GI clinic and left a message for Dr. Fahl's nurse. We started packing and Aven took a nap. A little while later, I still hadn't heard back, so I called again. This time I actually got the nurse on the phone. I told her how I was concerned about the reducing substances, and wanted to make sure Dr. Fahl was aware of them. She said she would check Aven's lab info that had been sent and ask the doctor, then call us back. When she called back, she said that somehow Aven's information from Sitka hadn't been entered into their computer, and since it was just the paper copy, it had been shredded after our appointment yesterday (as was their policy). She had called Sitka and they were sending it again. Meanwhile, she said, Dr. Fahl wanted her to come back before we left to get a urine sample and full-body X-ray of her bones. We packed up quickly, checked out of the hotel, made it to the hospital and had those things done, then hurried to the airport. Aven handled both much better than the blood draws the day before, but wasn't a huge fan of the X-rays. They did X-rays of her head (front and side), chest, hands, knees, and back.

We made it in plenty of time, had some lunch, and got on the plane.

I'm sure after the last couple months Aven thinks all we do is fly!

I had prepared myself for not getting many answers while we were there, so I'm not really surprised at the outcome of our trip so far. It did annoy me a little that neither of the doctors had ideas as to her weight loss. I am glad that I called back in the morning and asked about the reducing substances. It would have bothered me if I hadn't. I also think it's interesting that Dr. Fahl didn't mention having those things done yesterday, but thought they were necessary after I had called in the morning. 

Now we're just waiting. Thank you so much to everyone who has been thinking about us. We really appreciate the prayers, and want to say keep them coming! We don't want anything to be wrong with Aven, of course, but if there is we want to find out so we can know what to do. We'll keep everyone informed of results as we know them.

Hey, at least this is making me keep up with my blog!