Friday, March 28, 2008
It's been awhile since I've given a really good update so here you go:
- Ryan is doing wonderfully.
- He probably weighs between 16 and 17 pounds. His last official naked baby weight was earlier this month and he weighed 15 pounds 13 ounces.
- He has one more Synagis (RSV) shot to go. Speaking of RSV, did anyone catch the story on the news last night about a boy who died of RSV at the age of 6! Sad story. Please pray for that family to be filled with God's peace at this time.
- We aren't completely out of RSV season yet. It ends around the end of April. However, we are starting to get out more. I'm still being careful. This rule still applies: If I don't know you; If you can't remember when you last washed your hands; If you haven't washed your hands within the last hour; If you have been sick recently...Don't Touch My Kid! Anyway, I'm being a little silly, but I really do mean it, but in a very loving, nonjudgmental, non-offensive kind of way.
- We are going on our first "breaking out of hibernation" big-time outing tomorrow night. We will be going to the rib supper in Marshall. We're meeting some family there. I'm sure we'll have a great time.
- For some time now Ryan has been having issues with the workings of his bottom end plumbing. Many of you know that one of his biggest struggles after we came home was getting him to be regular in bowel movements. That issue was resolved. It resurfaced when we started introducing new foods. For several weeks (maybe a couple of months) he has been going through a viscious cycle ending in the need for a suppository to relieve the problem. We've visited with the doctor and with our SoonerStart (early intervention) people. We've added a daily 1/2 jar-1 jar of prunes (he loves them), water when he will drink it (he only drinks it from my cup), and 1/2 tsp of wheat germ added to his food once a day. Something is working! He is now a much happier baby. Yea!
- He is drinking whole milk. We give him pediasure every now and then and only when we are away from home. He likes it real well. It is the only thing he will actually drink from a sippy cup and at room temperature. He still likes his milk warm.
- He eats anything he can get his little hand around. This includes trying the dog food. Yes! He finally managed to sneak a piece. He didn't like it. In fact it made him vomit. Has he learned his lesson? Does he leave the dogfood alone? Are you kidding!
- He takes 2 naps a day on good days, usually one 30-45 min. nap in the morning and one 1-3 hour nap in the afternoon. On days he doesn't get good naps he goes to bed great. On days he gets good naps he fights bedtime like crazy! On days we run and play and spend the day away he oftentime fights sleep whether or not he has had good naps. I'm guessing he crosses that line of "too tired".
- We're trying to create a good nighttime routine...one that when he is older and protests going to bed we can say, "well, son, you've done this...this...this...this...and this...the only thing left is going to bed". So far our routine is this: bathtime, massage and pajamas, bottle, book (we're still working on Les Miserables), cuddle time, bedtime. This is still a work in progress. Some nights he's in bed at 7:30. Some nights I'm still pleading with him to go to bed at 10:30. In case you didn't know I'm a morning person, not a night person. :)
It Must Be A Boy Thing
One last thought for the evening...
The other day we went to the gift shop at Mercy Hospital. We (my mom and I) started showing Ryan all the cutsie 1/2-price Easter stuff...the bunnies, the ducks, the teddy bears, etc. He couldn't have cared any less. He didn't even reach out for any of it. He literally acted bored. I imagined him saying something like "blah, blah, blah, whatever". We started walking around the store looking at all of their wonderful merchandise when lo and behold the boy starts laughing. I immediately looked up to see what in the world could be so funny. What did I see? What was my son so excited about?
An ugly, green, stuffed snake!
Wednesday, March 26, 2008
Sunday, March 23, 2008
Thursday, March 20, 2008
Time did pass, and lo and behold, the masterpiece was finished with his greasy fingers and toes.
I know...I know...I'll keep my day job ;)
Wednesday, March 19, 2008
Now to confess one of those "oops" moments...Jennifer if you are reading this I thank you tremendously for this gift. I have misplaced your address otherwise I would have sent a thank-you card long before now. I just love this shirt, and I've been waiting for him to be able to wear it. It's one of those items that will go in his memory box when he outgrows it.
Ryan actually walked across the room last night. It was amazing. He walked from me to his toy piano that was sitting 8 or 10 feet away. We were amazed and very excited! He even did it more than once. Of course today he hasn't wanted to show off his new-found mode of transportation. I was hoping to get a video of it today to post, but Ryan didn't think he was quite ready for his walking debut.
And for a miscellaneous picture...
Monday, March 17, 2008
Saturday, March 15, 2008
March for Babies update:
We've officially raised $120 so far. This is very exciting. Thank you, thank you, thank you to those who have donated! I feel so strongly about supporting the March of Dimes. The March for Babies walk is in May. We still have time to raise more, and you can still join our team. We'd love to have you. I read about other families having 40 or 50 team members. How exciting! I tend to be a bit reserved until I know more about something, so this year I will be happy with any size team and, for the most part, any amount of donations. I hope to learn a lot about the walk this year, so, watch out! Next year I'll probably have big, loft, huge, exciting goals and plans.
Friday, March 14, 2008
Tuesday, March 11, 2008
Ryan is doing GREAT! I really don't think it was RSV after all. When he started the decongestant he was a completely different baby the following day. He hasn't had/needed a breathing treatment for a couple of days now. My mom is doing much better too. She may get to come home tomorrow or the following day. She is excited. Thanks for all the prayers.
I remember being told the day I went into labor early with Brandy that I would forver be categorized as “high risk”. I find that people are continually divided into categories, “clubs” if you will, in this life. There is the the “singles” club, the “newly married” club, the “new parents” club, the “parents of teenagers” club, the “empty nesters” club, the “grandparents” club. The list could go on forever, and these are only some broad categories. Then there are clubs within the clubs like “parents of kids with birth defects”, “parents of preemies”, “ grandparents raising grandkids”, etc. Of course this is just my observation and my opinion. There is no scientific basis on which I make my assumptions, but if you think about it, it does seem quite true.
I'd like to talk about a couple of the groups of which I'm a member. First is the “Preemie Parent” group. I just love the website http://www.shareyourstory.org/. It's a website designed for and by parents of preemies. Most of the members on the site have a preemie, or very nearly had a preemie, or have had some very close encounters with prematurity, or have had a child with a birth defect. The site is part of the March of Dimes. I love going to this site and reading and gleaning information from other mothers with preemies. Unless you have had a preemie there are so many things that “normal” people just don't understand. I didn't realize a lot of the issues with prematurity, and I still don't relate in some ways because my preemie doesn't have some of the issues many preemies have like feeding tubes, reflux, growth problems, learning problems, CP, etc. I can't tell you how many times I've asked for advice from my online friends, and I've received trusted advice and much needed encouragement from these families who are also in this “Preemie Parent” group.
I'd like to talk also about a group I'll call “Parents Who Have Said That Final Farewell to Their Child”. It's not a group I would have chosen to join, and it's definitely a group I pray no parent has to enter. When you enter this group it sets you apart from other parents in very complicated ways. I've had some friends be frankly honest with me and explain that they struggle with getting too close to me for fear of not knowing how to deal with Brandy's death, for fear of being reminded that they, too, could possibly lose a child. I've had some people, who I once considered close friends, act like I no longer exist. I've had some friends accept Brandy's death, accept me, allow me to talk about Brandy when I need, rejoice with me now, and love me through it all.
So you may be wondering what started this rant today. When Brandy was born I became close friends with someone. We talked daily. She offered encouragement through scriptures and prayer and by just being there. I love this sweet, sweet woman. I called her the day that Brandy coded in the hospital. From that day forward she never spoke to me again. She stopped answering my phone calls. She stopped responding to my e-mails. It was really sad, but I didn't harbor any ill feelings toward her. Yes, I was confused, but I wasn't mad. I prayed for her.
Fortunately I don't have the experience of being on the other end of a situation like this. I've never been close friends with someone who has lost a child. I've learned from my close friends what a difficult situation it is being the friend of someone who has lost a child. What do you say? How can you comfort? How do you go on with all of this together, as friends? I don't completely understand that position because I've never been there, but I understand it to be a difficult one which is why I won't judge anyone for struggling with it.
Just yesterday I happened to run across this woman in an elevator. Of all people to be trapped in an elevator with, I was excited. I have longed for seeing her again and talking with her. I was hoping for either a great “reunion” of friends, but I was willing to accept a “termination” of friendship if that is what happened. I wanted to sit and reminisce, but I mostly wanted to know, “did I do something wrong? “Could we be friends again?” I got neither. The conversation was cordial, but it was very empty. I left the elevator wishing for more. I was hoping for some closure instead I left with that feeling of “there's still some unfinished business”. Perhaps dealing with Brandy's death was just too much for her, but I still don't understand why I must, in a sense, die too.
Here is a list of things I wish people understood now that I have lost a child:
- I lost a child
- Saying that final farewell is excruciatingly painful
- I know Brandy is in a better place now, and desiring/asking her to stay on this earth would have been extremely selfish of me
- I miss her dearly
- I don't dwell on her everyday, but there isn't a day that goes by that I don't think of her
- I love talking about her, but I promise I won't trouble you with long conversations about her unless you ask
- When I start to feel sad I often imagine her dancing and laughing and playing on Streets of Gold. It makes me feel better especially since she would have never done those things here on earth
- I still cry from time to time
- I sometimes look at other little girls who would be about her age and imagine what it would be like if she were still here
- Just because Brandy died doesn't mean I did too
- I'm still here. I still exist.
- I still love to talk about the future and having more children and loving the child I now have
- I still love to have fun
- I still love to laugh and play
- I love to get together with friends and just talk about life...not the past, but the excitement of the present and the anticipation of the future.
- I love my life, and I'm excited about what God has in store for me.
- I eagerly look forward to Jesus' return.
- I am more excited about the day I go to Heaven than I have ever been. My little girl is there and I look forward to seeing my Jesus and my baby when God says its time for me to go.
- I hope God blesses me with a long life here on earth. I am such an unfinished work. I have so much to learn, so much growing to do.
If you've ever lost a child and want to contribute to the list please send me a note.
Saturday, March 8, 2008
"Caution! May cause drowsiness. Do not drive or perform other potentially dangerous tasks until you know how this medicine affects you."
I think I'll rewrite it to say: "Caution! May cause extreme excitability, giggles, and the absolute refusal to go to sleep. This medicine may also necessitate the implementation of creative measures to get your child to actualy swallow the nasty stuff." Ryan got his new medicine yesterday. It is Respi-Tann, a decongestant/cough-suppressant. He hates the stuff. I've never seen a kid hold something in his mouth as long as Ryan will this stuff without swallowing. He got his first dose yesterday afternoon. He has had 2 doses today, am and pm. This evening he has been so incredibly wild, off-the-walls kind of wild. He has been very giggly, and getting him to go to sleep was a BIG challenge. It could be related to his lack of routine this week with going to the hospital so much, but I am wondering if it might be the medicine. Ryan is doing very well. I'm starting to think that maybe this little illness was actually just a cold like the pulmonologist tends to think. Today he has been soooo much better. He has been coughing, but the cruddy sounding congestion that he was having is a rarety now.
My mom is doing better today. She is very ready to go home. It will still be a couple more days I imagine. She still has some hurdles to overcome before they are going to let her go home. She took a walk with us down the hall today, and that is a good start towards coming home.
Thank you very much for all the prayers. I love you all.
Friday, March 7, 2008
One of the traditions in our house is watching Star Trek (the original series only). Yes...we own all of episodes from the original series. Almost every evening after Ryan has had his bath we watch an episode. We started noticing that when the theme song would come on he would suddenly stop everything he was doing...even eating!...and begin watching the TV. After awhile we started paying attention to Ryan. He LOVES that song, but he doesn't just love the song he LOVES the words (names of actors) that pop-up on the screen as it plays. He just laughs and smiles so big everytime a new name appears. It's great!
He is getting breathing treatments 2-3 times a day with Xopenex. The pulmonologist also prescribed something for his runny nose. I don't know what it is, and he hasn't started it yet because the pharmacy didn't have any yesterday. We will pick that up today.
Some specific prayer requests: please pray he doesn't get any worse with *whatever* he has. Please pray also for a hedge of protection around him as we are spending a lot of time at the hospital with my mom. Please pray for my mom. For those of you that don't know she had a small bowel obstruction. Her surgery was Monday. She was hoping to be home long before now, but she's had a few unforeseen setbacks that have delayed her discharge. She is doing well, but she is still in a lot of pain and is getting discouraged.
ANSWERS (You can probably figure out what questions were asked)
--Yes, he's been quite cranky with this illness, but it comes and goes. Sometimes I question whether he really is ill...he still acts like a wild and crazy nut at times
--No he hasn't been running a fever
--He weighs 15 pounds 13 ounces
--He has taken 7 steps by himself (falling on the 7th)
--He has a good appetite most of the time, but lately he hasn't wanted to eat much of anything
--He is starting to eat finely chopped, mushy, table-food
--He can hold is bottle, finally!
--He will only hold his bottle when HE wants to
--His favourite thing to play with is the dog's water dish (yes, it's a constant battle)
--He is wearing size 6-9 months, but he has started to wear some of his 12 month clothes
--He has not started drinking from a cup. Yes, we've introduced it. If you know of a sippy cup that will handle warm milk (the one's we have form an internal suction that makes it impossible for him to get anything out if the milk is warm) let me know.
--Before you ask...no he will not take cold milk or cold anything else for that matter.
Wednesday, March 5, 2008
Happy baby boy... chewing on a brush.
...and quite proud of himself, but very, very cute.
Me and Mr. Squid
This is Ryan taking his breathing treatment this morning. The nebulizer compressor unit looks like a cow and the the mask looks like a fish or squid.
Tuesday, March 4, 2008
After nearly an hour of waiting we saw the doctor. I was really expecting (hoping) that the doctor was going to say it was a simple cold or allergies or even teething. Much to my surprise Dr. S said Ryan sounds like he has RSV. The progression of symptoms fit, and he said his lungs sound very typical of a baby fighting RSV. Oh my!
Do you know how disappointing this is? I've spent the last 6 months doing everything I possibly know how to do to keep Ryan well, and especially free of RSV. There is probably no way we will know where he could've been exposed. Many of you know we don't go anywhere with Ryan. RSV can live on hard surfaces for at least 6 hours. More than likely I brought it home from Wal-Mart or Wade brought it home from work.
So all in all we are now battling RSV at my house. Ryan is on breathing treatments every 6 hours as needed. The doctor said it is very mild at this point and the Synigis was probably the biggest contributor keeping him from getting horribly ill. We are praying for rapid healing of this infection and definitely that it progresses no further.
I'm having trouble uploading the video. I'll try later.