you oughta see this!

I know every parent reading this will know what I mean. I just wish you all could be here to see this. Not any specific "this." I wish you could be here to delight with me in the 1000 things I see in my kiddos and my husband every day (and that I could never capture on a blog).

Athan smiles with his whole body. His forehead wrinkles, his ears go up, his eyes squint, his arms and legs and body wriggle with delight, and his giant toothless grin melts my heart a hundred times a day.

Morgan is such a fun kiddo. Yes, even when she's oiling up with A & D. She has been telling us stories. "Once upon a time, Morgan was a little girl, and went with her Dad." She is also really making strides with the potty thing (have I mentioned that she is pretty much doing this herself - I was going to wait until later in the fall).

My husband is an amazing father. Athan already knows his voice and turns to find him when he hears it. Morgan adores her Dad. He teaches me about parenting every day. I couldn't do this without him.

I'm just in such awe of the people God lets me live with and be with every day, and I wanted some company in my celebration tonight. I hope for all of you to have occasion to celebrate your own gifts soon, and that others will join you in your delight and gratitude.

VIPS

We had our initial evaluation with VIPS yesterday. Amanda was wonderful, and she showed us lots of ways to help Athan learn to use his eyes. It is, of course, impossible to tell just how well Athan will be able to see, but we know that he CAN see. He is tracking faces and objects, but he is somewhat inconsistent. The exercises Amanda will do with him and teach us to do will certainly be good for him, regardless of how good his vision turns out to be.

We also got an e-mail from Lauri, the PT who did the evaluation last week. Her test results confirm delay, but it is consistent delay (across all areas he is behind the same amount). We have been doing some of the exercises she showed us to help him with his head control, and we are excited about learning more once therapy actually starts.

His reflux is also much better since we stopped the Captopril. He is much more relaxed when he eats, and he is resting better between meals. So glad we're off that med! :)

Oh! Thanks for all the great tips. Aunt Berniece & Abby suggested baking soda, which got the greasy gunk out of Morgan's hair, and Dawn worked best on her skin. :)

any suggestions? :)

Well, Morgan had a great few nights where she was staying in bed and resting well through the night. And then...

Last night our friends Alan and Sarah were here watching a baseball game with us. I thought I heard some rustling upstairs, but I wasn't sure if it was Morgan or our neighbors (hard to tell in apartments, ya know?). I talked for a little bit longer, thinking Morgan would come downstairs like she usually does if she's up. Then I headed upstairs.

It was Morgan. AND I had left the door to our room open, which I rarely do after she is asleep. She left her room, went into ours, stripped clothes and diaper off, climbed on top of the changing table, and proceeded to cover herself in A&D ointment (after she tossed all the push-pins from the cork board onto the floor, which I almost stepped on before I realized the extent of the damage). I don't know if you've used A&D, but it's super greasy diaper rash ointment. She looked like she was oiling up for a body building competition. It was all over every inch of skin she could reach, and in her hair. Then she could not figure out how to get down quickly enough, so as soon as I topped the stairs, she asked "Did Morgan go tee-tee on Baby Afan's changing table?"

What can you do except smile and clean up? Especially since it was my fault for not keeping the door closed or getting upstairs quickly enough. So I put her in the tub (at 10 o'clock), and we washed and washed and washed. Baby soap. Regular soap. Dish soap. Twice each. She was still oily when I got her out (after 3 baths).

:-)

So this morning, she's better. She's absorbed all the oily gunk into her skin. The issue is hair. I washed her hair 3 times, and it is still FULL of grease this morning. Any helpful tips (besides "lather, rinse, repeat, repeat, repeat, repeat..")?

an odd feeling

For Athan's sake, I'm glad we don't see any doctors again for a while. He needs a break.

For Mama's sake... It's odd to have seen an MD so frequently, and now we're on our own for weeks. This will be our longest stretch without seeing a doc so far. It's exhausting, but at least reassuring to know that "experts" are seeing Athan so frequently. For the next few weeks, it's all on Ryan and me, and today that makes me a bit nervous. I suddenly want to call and schedule and appointment with Dr. Coburn in 2 weeks, just to make me feel better. I won't, but it's tempting.

Athan was pretty sore after his immunizations, and he had a slight fever last night. He seems better today. Some lingering soreness, but the fever is gone. I think I hear him "requesting" Mama right now. :)

Dr. Coburn today

We saw our pediatrician today. It was a full day again: We started immunizations today, which meant no less than 4 shots for our boy. He also has an umbilical granuloma - a litte red bump of extra tissue in his belly button - that required silver nitrate application (which we will probably have to repeat in 6 weeks, and he may have to tie it off as well).

I also told Dr. Coburn that Athan had started refluxing and coughing lately, which we learned from the PT is common in babies with low muscle tone like Athan. However, it also coincided with the addition of the most recent heart med, Captopril. Dr. Coburn says that it is almost certainly the medicine. So we are stopping the med, and we'll be in touch with cardiology to find out if we will have a replacement med or not.

Seeing Dr. Coburn is so reassuring. Above all, he listens. He is attentive to his patients, and he keeps up with Athan via much correspondence from UK. But he also listens to Ryan and to me. I appreciate so much his respect for our voice as parents. So encouraging, and so much more likely to do what is best for Athan because he finds out all the variables before deciding what to do.

And Athan, by the way, is amazing. For a week he has had trouble sleeping because of reflux and coughing. Yesterday he had an EEG and blood drawn for labs. Less than 2 hours ago, he had 4 shots and his belly button treated with silver nitrate. And right now he is laying in the floor kicking and grinning and cooing like none of it happened. I am in awe of our little guy already. Such resilience.

Now we finally get a break for a while. We have more appointments at UK in 4 weeks, and Dr. Coburn again in 6 weeks. It'll be nice to have a break from UK days for a while. yeah! :)

2nd/3rd - EEG/Neuro

We took Athan to repeat his EEG. Not fun. The test itself he doesn't even feel, but the prep and clean-up are the tough part. The EEG measures electrical activity of the brain, and to connect the wires that pick up the signals, his head was scrubbed with some rough, grainy stuff and covered in goo. Then she wrapped his head in gauze to keep them in place - about 25 wires. Then she records the measurements, then takes all the gunk and goo off.

The results this time were pretty much the same as the ones from our time in NICU. Athan has some abnormal spikes of activity from one specific place ont he right side of his brain, which can be indicative of some kind of seizure activity. He has never actually had a seizure that we have seen, but because of the EEG, he will stay on his anti-seizure med. The good news is that the MD (Dr. Robertson) says that instead of increasing his dose as his weight and height go up, we will just stay at his current dose and let him outgrow it. If we still do not see any seizure activity, we will be able to take him off of it. Our next appointment with neurology is in early December.

I was disappointed, of course that the EEG wasn't normal. Just sad for my boy. I really wanted off the yucky med, too. Still, though, I know your prayers are carrying us through all of this with more strength than I can explain. Thanks again, friends.

first appointment today - endo.

We saw Dr. Irene this morning. I wish you all could meet her - she is so great! So much energy and warmth - and she's good at her job. She says Athan looks good. We sill check his hormone levels for thyroid and growth with labs later today, and maybe adjust the dosage of some of his meds.

He is growing in length like a little weed! :) 24 inches today. He is still thin, especially for his length. However, the good news is that his rate of weight gain is up this time! yeah! :) He weighs 10lb 5oz today. Last time he was only gaining about 14 grams a day. This time he was a little over 20 grams a day. So glad about that.

We're grabbing some lunch, then heading over from the clinic to the hospital to repeat his EEG. Then we see neurology this afternoon for the first time. Will update soon.

long one...

So much to report! :) This could take a while:

This is the first time I've been to the computer in a while. Ryan has been sick (sinus infection), and so he could only help a little with Morgan and not at all with Athan. Unfortunately, Athan was also constipated and had some reflux last night, and Morgan woke and 3 times between midnight and 4 a.m. There wasn't a lot of sleeping here last night! :) But I got a nap this morning, Morgan got a nap this afternoon, and Athan has slept better. Ryan saw Dr. Coburn and got some meds going. He seems to feel better this afternoon.


We also saw Athan's physical therapist for the first time today. She just did the initial evaluation, and we won't have the actual score for a few days. Her name is Lauri, and her husband is also at the seminary to get his MDiv like Ryan. She understands the challenges facing seminary families, as well as the special needs Athan will have. In just a few minutes, she taught us some things that will help Athan strengthen his muscles and increase his muscle tone - especially his head control. So now we have some new exercises to work into his routine.

Tomorrow we're back at UK all day - to see endo, neuro, and repeat his EEG. Thursday we see Dr. Coburn, and we'll be asking about his belly button (not quite healed yet), reflux, and constipation. Next Monday we'll meet with a rep from VIPS to see if Athan needs therapy to work on his vision, too. We'll keep you updated on how the appointments are going.

Would you pray for me to find new times and ways to rest (even if it means leaving the dishes for a while)? I just want to be rested enough to parent well. Thanks! :)

a few pics

such a happy boy:


Morgan's favorite place to be:
the special shelf Ryan built and mounted for Athan's meds:
example of meds:

family, family, family!

What a week! We got to have a few great days with Nana and Papa, and now Grammy Tammy, Uncle Josh and Uncle Jer are here. We also got to meet Josh's friend Laura yesterday, and Morgan especially was sad to see her go!

The kids and I stayed home last night so everyone else could go to Cincinnati to a concert. My cousin Clay plays with Pat Green, and they performed there last night with Sugarland and Kenny Chesney. I think they had a good time, but I didn't ask many questions when they got back at midnight last night. :)

Athan is doing well this week. We're still trying to pack in the calories, and we have added the new heart med (captopril) 3 times a day. I am really hoping the heart surgery will get him off of all this cardio medication. UK is in the last stages of hiring a new surgeon, and we'll have more detail about the surgery when we meet with him.

He is just such a sweet boy! I wish you all could be here to see him grin at his sister when she says "hi bubba," and kisses him on the head.

better

The post-rant update is that I am doing much better. We are doing just fine with Athan's routine, and I'm thinking of some better ways to communicate with all the docs as we keep walking this out.

Athan and Morgan are LOVING it right now - Nana and Papa are here to see them! :) Ryan gets back this afternoon (having been at a wedding in Texas since Friday), and we're ready to have him here, too.

With all the extra help here, I have a little time to relax. Sorry for the short post, but I'm going to take a NAP! :)

frustration!

So many of you have expressed your appreciation for this blog, and I'm glad it has been good for you. It has also been SO good for me. It helps me process all of the various ups and downs and arounds of Athan's Journey when I have to sit down and organize it all into sentences and paragraphs that make sense.

But it isn't working today. I can't seem to process all that we heard yesterday into anything that makes sense to me or anyone else. Everyone's diagnosis is a bit different, and the instructions are starting to run into each other in seemingly incompatible ways:

He needs to gain weight, so he needs more calories. So we'll do the fortified bottles. But he won't take as much and he gets more gassy and (therefore) fussy when he has a bottle, so all the extra calories are spent when he doesn't rest well because he's still hungry and fussy because his tummy hurts. So I'll just breastfeed him more often. But not too often, or he'll spit up and loose the calories and meds we just got into him. There's also the issue of making sure he is actually hungry enough to eat well each time, or else he never gets the hind milk that has more calories and fat that he needs.

We need to do meds before he eats to make sure he is hungry and will take all of them in. But taking meds makes him tired, and then he doesn't eat well, which his calorie count can't afford. So we switch meds to after or between meals, and he just lets them dribble out of his mouth and won't swallow. We also have to keep his doses of certain meds spaced out, so some kind of schedule is needed. But when we adjust his eating schedule to up his caloric intake, his med schedule gets blown to bits.

His physical therapist wants him to exercise more, which requires calories that his cardiologist would rather us not spend. He needs to be active to catch up with his head control, but sleep enough for his cognitive processes to remember what his range-of-motion exercises are teaching him.

So take all of those tensions to the doctors' offices, and try to report what you've been doing at home for Athan. The result is that no one is happy. The PT wants more activity, the cardiologist wants more rest. The dietitian says more bottles, the geneticist says more breastfeeding. None of them are talking to each other, and when they talk to us, each one sounds like a reprimand of some kind. That slathers on another layer of internal tension for me - don't ever state or imply that a Mama bear is not doing all she can for her cubs unless you want to get mauled. Ok, maybe not mauled. But it doesn't make for a receptive audience, I can tell you.

So, even 24 hours later, I still have no idea what to do. Apparently, we have to make sure that Athan is awake and sleeping, active and resting, burping, pooping, and eating (from bottle and breast) all at the same time for 28 out of 24 hours a day. If we do all that, plus give Morgan away immediately and never sleep again, then we will be doing all of the "best" things for Athan.

I just needed to rant. Now I can go back to doing the best I know to do today. Thanks for staying with us through all of this!

cardio visit today

We were back up at UK bright and early this morning for a couple of appointments for our boy. Athan was seen by Ronda in NICU clinic. She is the physical therapist, and she squeezed us in so she could do the evaluation we needed to qualify for First Steps. She'll get her report to the First Steps folks, and we'll be hearing from them about what we do next.

We also were seen by cardiology. As we found out last time, Athan will have heart surgery sometime between 6 mo. and 1 year old. The hospital is hiring a new surgeon right now, and our cardiologist (Dr. K) says he is a great surgeon with over 20 years of experience. Once the hiring process is complete, we will meet with the new surgeon and get more details about the specifics of the surgery. Dr. K also added a new med today - one that will cut down on the amount of leakage in one of Athan's heart valves.

The most immediate concern about Athan right now is his rate of weight gain. He is gaining, which is good! He is just hovering a bit below the rate of weight gain they would like to see. We discussed several options, and we are going to try several ways to get our kiddo more calories while keeping him from burning to many calories unnecessarily (new heart meds should help, bottles with fortified breast milk, increased frequency of feedings, etc). We just have to keep playing with the options and find what works best for Athan. Would you pray with us for Athan to start packing on pounds?

Big thanks to Adam and the Herons for taking care of Morgan today. It is such a big help to us all! :-) I think Morgan only bullied Margo a little this time.

attempted Thank You turned comedy of errors

Kim was Athan's primary nurse in NICU (pic posted in previous post, if you need a visual). She drove all the way out here with her girls to see us today. I wanted to take them to lunch as a (very small) gesture of thanks for the amazing ways she took care of us all during such a difficult time. I think I just ended up torturing them for 2 hours!

We left Athan and Dad at home, and headed downtown Mayberry - I mean Wilmore - to Tastebuds. I love that place, but it might be the least kid-friendly restraunt known to man. For the first time in history, the tiny little understaffed soda/sandwich shop was packed. We cleared our own table so we could sit at a "booth." The term "booth" needs some defintion: picture the smallest table you've ever eaten at, then cut that in half, and that's the size of our table today. Around it are the chairs from the world's first theater - the kind that fold up and down. So we squeeze in a 1st grader, 2 toddlers, and 2 mommies (one pregnant). We have to enlist Kailey (1st grader) to hold down the seat for McKinley (1-yr-old) so she doesn't disappear into a taco of wiggly discomfort when the seat flips up with her standing in it! Kailey, great big sister though she is, could only take so much of being McKinley's jungle gym. Morgan, meanwhile, has flipped her own seat a couple of times and spilled most of her lunch onto the floor below us, and refuses to eat the rest. We're fighting like crazy to keep kiddos' feet out of the mess below and hands out of the hot pizza that is now taking up most of the square inches on the table. When Kailey is finally fed up, she moves into my seat to sit by Morgan and I fetch another chair to sit at the end, only to have Morgan climb immediately into my lap because she's afraid I'm leaving. When she calms down, we shuffle again so Morgan can sit by Kailey....

Getting the picutre?! That went on right up until Kim had to leave - just as Morgan (quite suddenly) hit the I'm-too-tired-to-stop-screaming state.

I should have just sent her an "I 'heart' Nurses" coffee mug, right?!

Seriously, it was so so good to see Kim again and meet her beautiful girls. If she's brave enough to let me try again sometime, I think we'll stay here for lunch! :-)

continued improvement

Being home with our kiddos has been so sweet these past few days. Athan is doing well - getting so big and strong! He takes meds like a champ, too. Morgan continues to settle in and settle down. She is still very much 2 - always testing limits like toddlers are supposed to do. But you can just tell she's happier and more secure now that she's home and has some kind of consistency. Ryan and I are resting more, and trying to get things in order before school starts.

Thanks again for praying!

3 things

1 - Thank you all for praying. The power of prayer is being lived out in our house and in my heart. The panic is subsiding. The toddler is...well, "subsiding" might be the best word for that, too. :-) Ryan and I are trying to get some rest. Things have just gone much better these past couple of days.

2 - We had our initial meeting with First Steps. Karen (wonderfully helpful person) came by the house on Tuesday morning to tell us all about the program and get the paperwork part of the process underway. First Steps, if Athan qualifies, will hook us up with a physical therapist to work with him to improve muscle tone and help him meet some physical developmental milestones he may need some help with (like head control, etc.).

3 - At our check-up yesterday, Athan was 9lb 6oz. The appointment took a while, and then drawing blood for labs was pretty tough this time. He was pretty tired from the whole thing, poor guy. Meanwhile, however, Morgan got to spend the day playing with her friends Madeline and Miss Trish. It was quite a fun day for her! :)