one mom's journey with the special needs life, Christianity, and learning to be the best me
Friday, April 20, 2012
Super embarrassing.... Confession Tme!
My boys have started to rhyme and really goof off with words.
We were, unfortunately, in the doctors office this morning, when the boys started out,
Hutch, butch..... Not like the dog, Minichs, but actually rhyming with hutch.
I knew what was next. Don't ask me how, but I guess the mommy radar went up, so I wasn't surprised at all when the next time I heard was...
Hitch....... And then the big naughty one. Yes, my children said it. Both of them.
It was kind of logical I guess, just moving from the U sound to the short I sound. But I was still quite shocked....
Don't say that word, boys, we don't need to say that!
Thankfully the doctor was out of the room, but the door was open, so who knows what unsuspecting individual heard.
Oh well. Some things just cannot be prevented. You can only correct speech after it happens when it is something like this. I got a little chuckle out of it later, though.
Friday, February 10, 2012
Ilse's Nine Month Update and Life and Boys
Ilse is 27 1/2 inches long now, but as of February 8th, she was only 12 lbs. 5.5 oz., which is only 1lb 1oz heavier than she was at six months. We are pretty concerned about her weight, since in the last few days she has dropped a whole pound. She has been sick off and on for two months, really since mid December. We have had one ER visit, another ER visit that resulted in a night in the hospital, another ER visit to replace her button when it came out in the night, a surgery to insert ear tubes because of ear infections that wouldn't go away even after three different antibiotics, an antibiotic that made her scream for several nights in a row, four different bouts of diarrhea-- the first lasting for 23 days, and the latest for one day, two nights, and part of another day. This latest bout made her lose the pound I mentioned earlier.
Next week we will be beginning some deep testing on her immune system. They are going to see if her body has reacted properly to her vaccinations, do a complete metabolic panel which includes liver function, and check something having to do with protein albumin, or something like that. The reason the doctors want to do this testing is because the last immune system testing just raised more questions as some of the numbers were high and some were low.
We did have Ilse tested for allergies to milk, soy, wheat, and egg. Of course we knew she is allergic to egg, and I was honestly hoping she would be allergic to milk since that would explain the random diarrhea and barfing, but no such luck. We will have to look deeper. Of course some of her barfing is because of SLOS, but I don't think all of it is.
Ilse has really started playing. She grabs for toys without fail these days, and she brings things to her mouth also. Her fingers are her favorite toy, though. The other night when she should have been sleeping, she was instead holding one finger in her mouth, her other hand on that hand, and talking. It was super cute and kept me awake quite effectively. I bought her the Fisher-Price Jumperoo, and she loves it! She doesn't quite jump correctly. She more break dances.....
I love watching her play. I am working on fattening her up, but it is a constant struggle to get enough food in her. The last two days she has only barfed once a day. That has been nice. Also the last two nights I have gotten up in the night to feed her. I intended to get up twice each night so that she would be eating every three hours all day and night, but this tired mommy just can't do it. In fact, I wouldn't even have gotten up the first night I fed her in the night except I dropped my phone on the floor in the dark, before I got the alarm turned off. That right there got me out of bed which in turn got me to her room to feed her. I just couldn't do that twice in one night, though, so I didn't even try to get up again. Then last night the only reason I fed her in the night was because I just stayed up for it. Yes, that's right. I stayed up till 2:15am just to feed her again. I don't know what is wrong with me. I guess I am doing what I must to ensure that she gets fed in the night even though it makes me Mrs. Zombie. I generally get a little nap sometime during the day. The boys are really good at having "quiet reading time." they really do lay on their floor absolutely quietly and look at books, sometimes for two plus hours. They are amazing. I don't now now I would get through the night without that little snooze, and yes, I did just call two plus hours a little snooze... Lol.
Today Ilse actually ate in therapy! I fed her squash on my finger, and she gobbled it up. I need to do it again tomorrow before she forgets how to take food off a finger. Our therapist was amazed. Ilse is also doing really well putting weight on her legs and her right arm. I have ordered her some elbow immobilizing splints that my friend Micia found. It is too bad they aren't pink, but they will hopefully do the trick of getting her elbows locked so I can help her be int he crawling position without feeling like I am an octopus holding two legs, two arms, and a tummy. I guess that would be a quintopus, but I am not one of those either, whatever it is. Something with five appendages.... Um, yeah. :)
Tonight at Walmart I bought the boys camo bandanas and sleeping bags. They will have so much fun I think.
I have been doing really, really well making food at home. We are saving so much money it is unbelievable. We just got our Sam's bill, which before was in the $800-900 range, but this time was ZERO. Yes. So nice. With the diarrhea bout I did go to Starbucks more than I should have, but since I was dead on my feet from not being able to leave the changing table during the night I think I can forgive myself.
And then today we went to Starbucks to celebrate getting our tax return. :) I can't think of a better reason to go spend $14.
Life around here is busy but wonderful. The Lord sustains us, blesses us, and gives us much joy.
Saturday, January 28, 2012
Snapshots of our week
These first few pics are of Ilse exploring her world... This time her tube and her quilt.
Here is Ilse after her ear surgery. "Ah. I'm happy now!" she says.
Here is Christopher asleep in the car after a particularly long day of doctor appointments for Ilse.
Here are all three of my blessings together.
The boys run back and forth with their trucks for such a long time.
Wednesday, January 11, 2012
More Ilse videos.... Warning, cuteness overload!
Although, I can't imagine why anyone wouldn't enjoy watching this especially wonderful, awfully cute baby Ilse Joy!
Tuesday, January 10, 2012
Thursday, January 5, 2012
Life lately
Looking back through my posts, I realize that I haven't posted in forever. So much has been going on over here that I haven't had time to do anything... even sleep is a rarity.
Ilse is still on the path to wellness. It might be a long path, especially considering they aren't sure what is wrong with her. They have ordered some specialized immune system tests, and maybe we will know what the results are in about a week. Hopefully it won't take longer than that. A week is already a long time. She did have a bacterial infection, and they had no idea where it was coming from. It could be her mic-KEY button, but we would have to pull it and culture it to know for sure. Unfortunately, we have to wait to do that because they put Ilse on a strong antibiotic, and again, unfortunately, it was obviously too strong for her since it set off a string of night screaming that the world has never seen before. At least my world! Finally we put two and two together and the doctor had us stop the antibiotic. Ilse slept pretty well last night, and so did I. Ahhh. However, I managed to wake up more tired that I had been the previous day when the night before I had barely gotten any sleep at all.
And it was good that yesterday I was more awake, because I didn't have time to even use the bathroom from the morning all the way until six or so. A lifetime of practice finally put to good use. Lol. Yesterday Ilse and I went to get her labs drawn for the aforementioned blood tests. The first lab, at which we had an appointment, told us after we had waited of course, that they couldn't do that test. We hightailed it down to medical city, and yes, I had to talk myself down just in order to park at that place.... and got her labs drawn there. She had two diarrheas while we were at the lab. That made three up to that point, and scattered through out the day where about four more. Needless to say, they are concerned about dehydration and c diff. for this baby. We won't know about the c diff. test for a week also. At the lab they determined that Ilse is too small to do all the tests they wanted, so we have to go back again on Friday to draw for the rest of the tests. One of the tests they did draw for measures how well the white blood cells fight infection. Because, I think it is clear by this point that Ilse has a bit of trouble with infections.
The concern for the immediate future is that her bacterial infection might reassert itself since we couldn't finish the antibiotic. If she gets a high fever or screams uncontrollably, we are to call the doctor ASAP, or, if it is night, we are to go to the emergency room.
Lord willing, Ilse got enough antibiotic to do the trick. Although, if it is the button causing this problem, it will likely reassert itself and we will be in a world of trouble, unless of course, we can have a different antibiotic, although at this point I am pretty wary of too much more medicine.
The rest of our busy day yesterday was spent at UT Southwestern medical center. Tim had his much awaited appointment with a wonderful hip doctor. He was wonderful, and not just because he looked exactly like Mark Ruffalo. He did tons of x-rays, and gave a much better description of the surgery, complete with hand gestures. Tim will plan on having the surgery late May, but first he needs an MRI to confirm what is going on and to see the exact state of his cartilage.
If everything looks good, or bad, whichever way you want to phrase it, he will have the surgery. It doesn't sound as bad as the first doctor made it sound, and regardless of how long the recovery is, having the surgery in state is an automatic bonus. The first doctor said we would have to go out of state, and that sounded atrocious, as you can imagine, since I am determined not to go anywhere without my kids.
The boys are doing really well. They learned about colloquialisms, paramedics, aerodynamics, and oh my goodness, earlier Chris said something so brilliant I wish I could remember what it was.
I finally got Ilse's nose suction machine figured out and in use. Hopefully it will help her. It is too bad that there is no way to decorate it like a squirrel or something. It isn't too cute.
Mom came over yesterday at the drop of a hat and stayed all day long to watch my boys. They mostly behaved. Now my laundry is all folded, my kitchen is clean, and my floors are vacuumed. Thanks, Mom!
I have lots more to write about. However, this post is so long that I had better give your eyes and my fingers a break.
Today, though, if you have a minute, pray for my friend Amber Bowers who is having her third baby today. This is her second daughter, and could also be her second child with SLOS. One baby with SLOS is hard enough depending on how severely the child is affected. Two would be significantly more difficult, and yet, the Lord really does give us the ability to accomplish all that he asks of us. And He has given the Bowers family so much joy. They are truly a wonderful example to me. Each child is a blessing, no matter the way God makes it.
As I have said before, I don't know what I would do with a 'normal' baby-- I have gotten so used to Ilse.
I have another post to write soon, but now, I am going to call in the precious boys who just went out to play, and we are all going to lay down for a nap. It is practically a given though that Ilse will wake up the second I lay myself down.
Better hurry!
Thursday, November 17, 2011
Life and stats
Thursday, November 3, 2011
Doctors appointments for all of us
Friday Ilse goes to her new pediatrician for her six month checkup... I can't believe my sweet baby is about to be six months old. She has grown and changed so much from the wimpering little lamb who never moved around. She now looks at me! And she lets me touch her head. Lol.
Saturday Tim and I go to the eye doctor, and I cannot wait to get my new glasses and contacts! I love going to the eye doctor like my friend Rebekah loves the dentist. There are few things better than new contacts!
Monday Tim goes to see the orthopedist. He is excited about that appointment almost as much as he is excited about getting his tonsils out.
I believe those are all the appointments we have coming up, other than Ilse's regularly scheduled appointment on November seventeenth.
I am so thankful for insurance!
Ilse and the boys
Ilse slept through the night last night! I think it might have something to do with the fact that she had a fever and I doped her up on tylenol, and also possibly because I fed her more than I usually do. I am working my way up to feeding her five and two thirds ounces, but if I can get more than that, I am going to work at getting her into a regular baby schedule. The problem is, I don't really know what that is. Ok, I don't know what a regular baby schedule is at all. But we're going to pursue one.
I knew Ilse was sick, but I didn't know how badly she was sick until I tried to give her her Tylenol orally. She barfed just with having less than a tenth of a mL in her mouth. Poor little baby. I am going to watch her to see if she gets better or if she has an ear infection.
So last night I got four to five hours of sleep, and believe me, they were precious however interrupted by poor Christopher's coughing. I am still sick, though. I don't feel as horrendously horrible as I did yesterday, but I am no where near myself. Last year when I was pregnant with Ilse I had five colds in a row. One of them lasted a month. If I get another cold after this one, I am going to think last year wasn't related to pregnancy at all, but was instead just the time of year, which is odd, since it didn't happen to me previously to last year.
I am needing to do some organization in Ilse's room, but I have been putting it off since I don't like doing things like that by myself. The problem is, there doesn't seem to be any time for things like that when Tim is home, and the weekends lately have been for recuperating, not doing projects. Maybe this weekend will be different, if I can get better before Saturday. I have lots of clothes to store for little Olivia Grace.
Last night the boys told me about how when they grow up soon (lol) they are going to go to to
Walmart and buy me all the flowers that are there. And they said that Tim and I can stay home and watch something while they are gone. I get such a kick out of their plans for the future.
Right now they just wanted to pray for a new baby in our family, and then Joey wanted to pray for Auntie Ivy's baby, so we prayed the same things for little Olivia Grace that we always do for Ilse.... That she will grow strong and glorify God.
The glorifying God part is what is truly important. We pray that all the time.
Thursday, October 6, 2011
Post Pregnancy Update
My mind is shot. Tim delicately told me last night that I've been repeating myself for a while. I'll tell him something and then tell him again later. And while this might be true, I have to admit I doubt it a bit since he isn't all that great at remembering stuff all the time either.
I blame it on the mag. That stuff has really messed up my memory. I was asking Tim the other day who came to see me in my room at the hospital after the c-section. I only remember Gloria Pittman, Holly, Jess, mom, dad, Christie.... I could only see a few feet in front of my face. I'm not kidding. I was so out of it! When I asked Tim what happened, he just started to laugh. Apparently I tried to talk and he had to fill in all the details, and then I just started, um, barfing. Yes. Nasty.
And since the mag, I can't remember anything nor can I focus on anything. I bet my blog posts make no sense. Maybe it's sleep deprivation. Where I used to need to do two things at once or I'd be bored, now I can't help but do twenty things at once. I'll walk through the house to get something and get distracted by three things along the way! That's ADD, baby, but the problem is, there is nothing NOTHING I can do about it. I refuse to take any drugs for it, or even go see a psychiatrist.... but I really am having a serious problem.
Thankfully my impluse control is beginning to come back. There was a while there where I was seriously worried about myself. I was wanting and almost doing things like setting things on fire in the shower just to see what it was like. No, I'm not a nine year old boy, but I sure felt like it!
I haven't experienced any depression. I haven't had time. I might be able to make time for that after I find time to teach the boys to read. Hey, I was proud of myself that I actually sat down today and read them a story.
~~~~~~~~~~~~~
Right now everyone in the house is sick but me. Christie mentioned getting together on my facebook, and I tried to comment, but something didn't work and I lost focus before I could finish the comment, but the gist was, everyone is sick. Except me. Ilse is so sick, Tim is dead on his feet, the boys are tired and sick..... there is snot on everyone but me. And I cannot stress enough the importance of handwashing, although, if they all had understood that before now, we would not be in this position.
Handwashing! It saves your sanity.
~~~~~~~~~~~~~
I love my little family. I love helping people and getting things done. I love a clean kitchen and I love it when my husband doesn't come to me at 11 at night and tell me he doesn't have clean pants for tomorrow. He did have them, they were just buried under everything that has ended up in Ilse's pack n play.
~~~~~~~~~~~~~
My favorite thing to do right now is walk into Ilse's lovely room and sit on her chair. The floor is clean and everything is dusted and properly put away.
And then my least favorite thing to do is compare Ilse's room's cleanliness to the boys' room-- which I have not vacuumed in a scandalous amount of months. Actually, I haven't since they moved in there when I was pregnant with Ilse. Mom has, but I seriously don't think I have. And their dressers are covered in dust. But the boys are happy. They have their toys and their family. And they are too short to see the evidence on the dresser tops of their mother's shortcomings.
Eventually everything will come together. Tim and I have decided not to get back into fostering until our lives are in order. When I can get a nice amount of sleep during the proper hours at night, and when Tim is not so exhuasted at work, and when I can sit with the boys and teach them things at the table instead of doing it in the parking lot while waiting for Tim to get out of work..... then we'll foster/adopt. And while my heart aches not to be doing it now, I don't think anyone would thank me for adding to our issues.
Now I'm going to try to get back to our finances.... yes, this blog post was a distraction. :)
Saturday, September 24, 2011
A baby and touch
I have been working like crazy on Ilse's ability to handle touch. I kiss her as often as I can, but very briefly, and while I am distracting her with funny sounds. I have taught her to tolerate her head being touched way more than previously, and I am constantly putting her in odd positions just so that she learns that she can be moved without needing to cry. She almost never avoids my eyes anymore, and she is doing so much better with crying when I move her. She also seems to enjoy my kisses even though resting my cheek on hers is still displeasureful to her.
I am so happy with her progress, but it breaks my heart that she needed to make any at all.
Here are a couple pictures of her and and the boys.
This bottom picture is of Chris after he 'got dirty' in the yard. He is so in love with dirt!
Wednesday, September 21, 2011
Language skills
Some of the things we're working on are:
"THE end," instead of "VE end"
"A minute ago," instead of "in a minute ago"
Using the "ch" sound instead of defaulting to the "sh" sound
The correct past tense of words like "Let"
Sometimes Joey will really blow my mind by saying something like: "Mommy, when Daddy goes back to the mans......uh, what's it called?"
And I'll say, "I have no idea what you are talking about."
And he makes it clear by his "oh" that he is completely shocked that I don't know what he is saying.
In my tired state I don't know if I've written about this before, but the boys also respond positively to a positive statement and negatively to a negative statement. So if I say, "We are going to the park" the boys say, simultainiously, "Yes." They are just agreeing. If I were to say "I don't want to eat right now" they respond, simultaneously, "No." It gets a little annoying to have two parrots, so one day I told them to say something else, and I gave them some ideas. "Really?" "Wow!" "That'll be fun." "I think...." Well, they stuck on the "That'll be fun" and that is what Joey in particular said in response to everything. And I mean, everything! "We need a nap." Joey: "Oh, that'll be fun!" "We're going to do jobs." "Oh, that'll be fun!" Oh my.
And the other day I was telling all of this to dad, and Joey came in to do an on the spot demonstration of language difficulties with this question: "Mommy, why are those cookies?"
"Um......sweetie, I just don't know."
All in all, the boys' speech has come a very long way. It has come from being absolutely unintelligible to being very, very good with just a few things that need fixing. At any rate I'm very proud of their hard work, even if sometimes the lack of excellent communication bothers me.
On another topic: the boys' new favorite thing is looking at the Toys R Us ad. They want to carry it every where, and they pour over every page. It's kind of cute.
And on still another topic, although related to the language topic: We danced around it for a while, but we've finally started actively encouraging Joseph to call Christopher something other than "Bam-Bam." Joey is just too old to go around saying that all the time. So we asked Bam-Bam (Mommy gets special privileges with calling him that nickname) what he'd like to be called, and he chose "Chris". Ok then. But Joey can't say Chris, so he calls his brother....... wait for it....... Christ. Yep. At least it's with a short I sound. :) Otherwise I think we'd have to work uber hard on fixing it.
Saturday, September 17, 2011
We are still here
So after little to no sleep last night, today was slated to be difficult, and it was. I finally started to feel human around six tonight and was able to start getting some things done. We went and got Ilse a new back pack for her milk, and I ran in to walmart to pick up a few things I'd forgotten the other day when dee and I went shopping.
We came home And let the boys play a bit and I gave ilse her bath. She hadn't had a bath in a few days, since we hadn't even gotten the groceries out of the car. I know, those things don't seem to go together, but they do since I had purchased some new soap and lotion for her to try to combat her eczema problem before it gets debilitating. We had been so tired that we hadn't been able to even unload the car. It's done now, thankfully! And Ilse is all clean again.
Even though these days are sometimes very difficult, Tim and I are so thankful for each little blessing God has given us, from the littlest baby Ilse to our great big boys. Today I was especially thankful for my sweet sister dee who came over to this ugly heap of a house and helped me clean my room up. That was a huge help today and yesterday when we had an unexpected visitor. There was no room for poor ya-ya and sarah on the couch, but my room was clean enough to visit in. Lol.
I need to be easier on myself and remember a couple things:
1. Ilse is still little and there many extra things involved with her care (and the boys' care, for that matter) that other people don't deal with with their kids, and so we aren't going to be or look the same. What another mother of three might be able to get done when her baby is four months might be another couple months away for us.
2. It has only been the last two months that I have been trying to get my life back on track. That's not very long, and I need to give myself a break. The month Ilse was in the nicu was unbelievable difficult, and the month after that was a month of recovery. We still aren't recovered, exactly... I cried the other day talking to Ivy about it. That experience left too many emotional scars to count. I am thankful the Lord knows and loves us through it. He is not up in heaven shaking a stick at me if my bathroom floor is hairy (post pregnancy hair loss, you know.... Wait, who am I kidding? All of us women are plagued with hair on a our floors.) and He is patient with me when I can't do things perfectly like getting to church on time all the time or remember to pay bills. Yes, I've forgotten a few here and there.
The Lord is unbelievably gracious. I have probably said this on my blog before, but I have had to make myself the rule that I can't sign up for anything that I can't get out of. Things happen and Ilse doesn't sleep, and I have things to do, et. cetera. And the Lord is gracious. That deserves saying more than once.
But sitting here with my sweet babies asleep in their room, and my littlest sweet baby asleep in her crib, I am undeniably happy, even though Ilse is doing the little "I'm still crying in my heart" breathing sound in her sleep. Ilse breaks my heart when she screams and cries through her baths because she doesn't feel well or is tired, and I break my heart when I yell at Christopher for going so darn slow and have to ask his forgiveness... praying together for God to forgive mommy and make her heart clean again.
But God it still gracious, and He shows His love to us in so many wonderful ways, not the least of which is the sweet forgiveness of my sons when I wrong them.
Oh the depths of the riches, the wisdom of God,
How immeasurable is His grace,
How unfailing His kindness, how far removed His wrath,
And His mercies are new each day.
For from Him and through Him and to Him are all things,
To Him be glory forevermore, to Him be glory forever!
Amen! Amen! Amen.
Friday, August 26, 2011
Ilse Joy Update
We play a few games together, but she's like me: stuff's only funny the first or second time. After that, Mommy's got to come up with something new.
It makes me laugh to see her smile, and tonight she was talking to me. I'd make a sharp sudden sound in her face, and she'd smile and make a sound herself. Then, I told her she was a blessing, and she gave me a gigantic smile. I told her again, but she wouldn't smile again. How do I improve on telling her she's a blessing? I guess I've got to work on it to find something additional.
Tomorrow morning we're going to get an antibiotic shot because I don't believe these 'oral' (lol) antibiotics are doing the trick. She's still way too fussy to be feeling better enough to be getting well.
We took a couple of naps today (Ilse and I) while the boys played quietly. They are so good about that. I can tell them to play quietly in the entryway or the hall, and they actually do. They populate the area with toys and books, sit down, and have a ball. I'm so proud of them. Lately I've been working with Joey on his enunciation. It doesn't do any good to know the words but speak them so run together that no one can understand them. He's getting better. I'm pleased that he doesn't get frustrated with working on it anymore. He just tries hard, and as a result, he's getting better and better at his speech.
Today I flirted with the idea of sending Bam-Bam to school. He has so impressed me with his quick thinking lately. I was teaching Joey how to say 'reflection', but Joey couldn't get the 'fl' sound. He kept saying 'fr' instead. Finally he got it and then I asked Bam-Bam if he could say it. He could, with a bit of work, and he told me that the 'fl' was like 'flick'. And then, today he told me that the 'fil' in 'Chick-fil-a' is like some other word that is 'fi'. Wow. That is so good, I think, that he recognizes that.
Don't worry, Tim quickly shot down the notion of sending him to school. Bam-Bam will be quite the reader, I think, if I can just find the time to sit down and teach him.
Joey has more develpmental issues to work through, but he is doing so well, too.
Thursday, August 11, 2011
I had a moment earlier
I resisted. Yay, good for me.
You see, Ilse's room is messy, and I keep hitting my feet when I walk in there. But I just haven't had time to clean it yet.
And I need to vacuum Ilse's floor, because there are fire ants in there. But I just haven't gotten in there to do it yet.
And we have baby spiders in ALL our corners. But I haven't gotten the vacuum around the house yet because of all the junk in the way.
And the kitchen floor is sticky. And I just haven't had time to clean it yet.
And my room is a disaster. And I just haven't had the energy to clean it yet.
And I still have grocery items out. And I just haven't had the time to put them away yet.
And I have stacks of paper on my desk that have been there for more than three months. And I just haven't had the time to organize it all and put it away. Yet.
There is more, but I'll spare you.
So even though the boys were supposed to be doing jobs (helping me) around the house, I sent them to play since I was inflicting my grumpiness on them. And I cleaned up the baby barf and then just sat down with my baby and rocked her. Then she barfed again, and I cleaned that up too. I smiled into her face, and she smiled back at me.
Even though all these chores I'm not doing every day are important, they just aren't important enough for me to give up these other things:
Pumping five-six times a day to have enough milk for my baby. People who nurse usually nurse more than five times, so I feel like I'm doing pretty well.
Taking care of meals for my boys.
Keeping Ilse's stoma clean and healthy. Right now it doesn't look so good, I don't think, so I'm taking extra good care.
Trying to get as much food into my baby as possible, but giving it in such a way that it actually stays in.
Making doctors appointments.
Getting some sleep.
Spending time with my husband. After all, he goes to work on Monday---- goodbye summer happiness.
Dealing with the evermounting bills. When will that tax refund get here?!? Or at least, Tim's first payday as a paraprofessional. Not the job we'd hoped for this year, but way better than subbing. We're very thankful.
Teaching the boys about having good attitudes and being thankful.
All my housework will get done, but it will just take a bit longer than it used to. And I'm enjoying doing it myself, because I know I can handle my life. I'm totally capable of handling it at this juncture, and I want to. It's just going to be slower. A lot slower. But Tim's happiness, the boys' joyful playing, and Ilse's smiles make all the toe-banging worth it.
~~~~~~~~~~~~~
Ilse is sleeping so peacefully right now. Whenever I lay her down we play her little lamb game. The little lamb (from Jessica) walks up to her face and says, "Little Lamb!" And kisses her twice. We do it twice. She loves it. We do the same thing with her little kitty (thanks, Jess!) when she lays down to play in her Play Place.
Ilse had her GI appt today. She is now 24 inches long, but only 9 pounds 9.5 oz. That's a major growth spurt.... 1 3/4 inches in four weeks. The doctor is not worried about her weight right now since she has some fat stores, but he does want me to give her some more food if she can keep it down. He'd like to see her establish a weight to length curve. He says she's just 'long and lean'. I wonder what side of the family she gets that from! :)
I've been pumping five times a day as opposed to the three I'd previously made time for. It's a huge time commitment (and money commitment) but it is so worth it to me and Ilse. If she truly does have SLOS, then the cholesterol I'm giving her via breastmilk is vital to her development, especially since I'm having major trouble remembering to give her egg. That's just not something I was preprogrammed to do as a mother. I've finally gotten my milk supply up enough to be able to support at least two more 90ml feedings a day. Hopefully I'll be able to increase my supply even more as Ilse grows. And if for some reason the test we should have gotten back yesterday comes back that she doesn't have SLOS (not likely) then I'll be super glad I kept pumping since it will be more likely then that she can eventually nurse.
Ilse's head control is getting better and better. I sit her on my lap and she can hold her head up but it's pretty wobbly. We'll keep practicing. She still won't pick it up when she's doing tummy time unless she's supremely mad. I can tell her vision is getting better and she is getting more social. I saw a flicker of disappointment in her eyes when I stopped playing with her the other day, so, like the good mother I am, I continued playing. :)
Tim and I have been so busy lately that we have accidently bought The King's Speech from Red Box, and Gone With The Wind from Netflix. Oh well.
My boys are in bed semi-on-time tonight, and they had a nice dinner, although right now I can't remember what it was. Oh yes, waffles. Boys love waffles. And hopefully I'll get into the kitchen semi soon and make dinner for Tim and me. Maybe I'll even get some of those groceries put away.
Friday, August 5, 2011
Mr. Joey
My poor baby. We got him all cleaned up and now he's holding ice to his face and sitting by his daddy.
Of course, Bam-Bam has to reach out and squeeze Joey's nose after he saw me gently touching it asking if it hurt. Bam-Bam? Boozer!
Tuesday, July 26, 2011
My Smiling, Growing Up Baby
Ilse is doing some other cute things, too. She has started to pull blankets and things close to her face. It's like she's cuddling with them as she sleeps. She has also started to pull her legs up under her butt, hiking her booty in the air.
She is still pretty congested. If it doesn't go away semi soon, I'll consider eliminating dairy from my diet, although the doctor told me that for that to be a problem for her, I'd have to be drinking multiple glasses of milk a day. I'm not (well, sometimes I am, if we have Oreos in the house. Or 'Nilla Wafers.), but I wasn't when this cold/allergies started, so that's not likely the problem. I really think it is allergies to something, because it is attached to a million and five sneezes. Ilse is the sneezing Queen. Five or more in a row is common!!
The therapist today was incredibly impressed with Ilse's swallowing. We were syringing milk into her mouth, and she swallowed it all. She even closes her mouth around the syringe like she is supposed to. As soon as it is possible, I'll pursue the lactation consultant option to see if we can get going on this. And I'm still planning on having Ilse see an ENT to see if there is anything wrong with her palette. It's possible that she could be fitted with a prosthesis that would cover her high palette and give her something to suck against. We'll see. The therapist mentioned that option and I read about it in a book (or somewhere-- I don't remember since I'm sure it was the middle of the night) and maybe, just maybe it is an option to help our baby out a bit.
I'm expecting to go to the doctor in September and have them tell me that Ilse's head is no longer small. I have a theory about her head size. Supposedly (and it really is supposedly) she grew extra big bodywise because of extra sugar. If that is the case, it only affects her body, and thus her head would seem small. We'll see.
Also, we are supposed to be getting results from the SLO testing the week of August 8. I am trying not to think about it too much because there is no speeding it up and there is no predicting what the results will be. There are so many good opinions on both sides of the issue. Tim and I lean one way some days and the other way other days. Either way it goes, Ilse is doing really well. She's completely on target developmentally with the exception of her neck muscles, and she is dramatically improving there. We love her and are so thankful to be the parents to a wonderful Ilse Joy.
*Note about the boys: They are growing!!! I'm going to have to measure Christopher specifically because no matter how much I feed him he still looks too skinny to me, and he seems tired lately. He is shooting up, so he must be in a growth spurt, or something. Both of them need new tennis shoes, because even Joey's from last year are too small for Christopher this year. Wow. I love taking them shopping, but for my sanity we're going to have to wait until it is a little cooler. I'm thankful for Old Navy flip flops!
Also, both boys are speaking better and better. Bam-Bam shocked me the other day with how quickly he said something, and Joey is using bigger and bigger words. What blessings both my boys are.
The Lord has been so good to bless us with three kids. Come November we've got to make a decision about fostering. Our inactive status expires then, and I believe that if we don't go active then, we lose our license and would have to redo EVERYTHING to ever adopt or foster again. Right now I don't know that I could handle a foster child (the paperwork and excessive rules), but maybe by November I'll feel differently. Honestly, we're considering, if we start fostering again, requesting a child/baby on a feeding tube. Homes for medically needy kids are hard to find, and we definitely have the experience. There are many things to consider, because it would even mean rearranging the boys room to fit another bed in there, and we could really only take a boy. Furthermore, our agency came down with this ridiculous ruling that you must accept any and all children you get calls about, because if it wasn't the Lord's will for you to foster that child, you wouldn't get a call about him/her. That's just dumb, in our opinion, but, that's what they think. Lots, lots, lots to think and pray about.
This post has to be done, because I need to go pick up my wonderful husband who took our boys to the park. Ahhh, a couple hours of quiet with my Ilse has been nice, and I got a lot done. :)
Friday, July 22, 2011
Your Mom's..... and Life
And today it was manifested to me that the boys are listening intently to my jokes. It all started with Bam-Bam telling Ilse her mom was an elephant. I died laughing, because, of course, he doesn't get the connotation. He was merely seeing an animal on her Play Place and incorporating it into a joke.
Then, the mom jokes morphed into some seriously funny material as Joey and Bam-Bam began to joke together.
Your mom's a spoon! Your mom's a fridge! Your mom's a sticker! Your mom's a bird!
And then, since they were talking to me, and my mom is Mamaw, the comments became:
Mamaw's a fridge! Mamaw's a bird! Mamaw's a fork!
I didn't enlighten them as to the real way to make your mom jokes. They are a bit young to understand. I just enjoyed listening.
My crowning glory of your mom jokes came when, at the last church potluck, one of my sisters remarked that some dessert was mousse, and I, in my great capacity for linking grammar and your mom jokes, remarked, "Your mom's mousse!" Because, she had MADE the mousse. I'm quite sure all of you see how I took the word "mom's" and transformed it from a contraction meaning "mom is" to a possessive. I'm sneaky that way. :)
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Right now we're working around the house to get ready for tomorrow. Well, I'm working. The boys are being wild and Tim is snoring on the living room floor with a very comfy baby on his chest. She has grown so much since these days:
I love my family.
Monday, July 11, 2011
This Week
We have therapy again tomorrow, and I'm afraid we won't be able to work on her sucking, because, really, who can close her mouth and suck when she can't breathe through her nose? I'm certainly not going to make her try.
This afternoon after our morning business we made it to Wal-mart. I'm so glad we got to go; we've been needing to for weeks. I bought some cherries. I always loved eating cherries as a child; I thought they were the most special treat ever and LOVED it when my mother bought them. I'm going to introduce the treat to the boys. Surely it won't hurt them too much when they inevitably forget to spit out the pit.
The end of my pregnancy marked the end of my decorating genius. I have so many pretty things to hang in Ilse's room, but I have no idea how to go about it. I'm going to wait for some advice before I do too much work in there, and in the mean time all the wall handings are just sitting in her crib. Sometime this week, in spite of all the busyness, maybe I'll work at it a bit.
We have doctors appointments Wednesday and Thursday. Wednesday Ilse will get 50 million shots. I'm so sad for her; I know it won't be fun, but we are determined that we will get her her vaccinations. We'll even get her the chicken pox vaccine even though it's kind of a rite of passage (in my book) to have the pox. It's a rite my poor baby can skip. Ilse's not the only one who needs vaccines. The boys are behind. I need to take them to the dentist too, but we have to wait a bit for that and I need to decide where to take them. Nothing could convince me to go back to the Medicaid dentist. I hate, loathe, despise, and abominate that office. There's a big sign on the wall talking about how they value their patients and treat them right..... blah blah blah. It's a load of hooey. There is a THREE HOUR WAIT. I do not feel valued.
Thursday Ilse goes back to the GI. I love love love that doctor, although I don't so much like having to leave my stroller in the hall, get my baby necked and have her freeze her little tookus off. Next time I'll know in advance and I'll carry in her diaper bag or something. I never did post what the doctor said about Ilse last week. She is on the growth curve. She is near the bottom, but she's on it. Yay! He says she looks great. She has fat stores which is what he wants to see. He doesn't believe in stuffing a baby and making her barf. He told me to cut out all the extra calories and you know what??!!?? Ilse is barfing less. She used to barf every feed, and now she doesn't. I don't know that she has barfed at all today, except when she pooped. That is a given. If she poops, she barfs. I kinda think that that is why she barfs in the first place. I had noticed how much less she was barfing since the hospital, and you know??? She's not pooping constantly like she did as a fresh baby. I'm betting she will barf less and less as she grows. Already the great big giant barfs are few and far behind. Now they are only moderately large. Mostly they are just tiny, not even what a normal person would qualify as barfing. And even though we're not giving her the Prevacid, she's not struggling with reflux as much. She rarely has the large screaming in pain episodes that she used to.
Ilse is going to be 10 weeks old on Wednesday. I can't believe it.
And lately, the boys have changed so much too. Mostly Bam-Bam.... he has grown tall! He definitely no longer looks like a toddler. He is a little boy now.
I was not a good example today. I was hot (no excuse) and I felt like I had two of the most inept children there ever were. Suddenly Bam-Bam could not remember his colors to pick up the right items, and Joey decided he did not know what a counter was. Oh my word. They also didn't know what a desk was, how to shut a door, and a myriad of other things. Finally I got it together and was only mildly annoyed instead of very annoyed. They are doing better now, I think, but that could be just because I stopped expecting them to know today what they knew yesterday. That is such a sad thing to have to give up on, but I needed to preserve my sanity. Tomorrow we'll get after them again to pay attention! If Mommy says put it on the desk, that means put it on the desk. It does not mean you can put it on the floor and act like you don't know what the desk is.
Ilse slept much better last night. We were such mean parents yesterday and kept her up as much as possible, and as a result we had a relatively good night sleep last night. Today, though, since she is sick, I couldn't stomach making her wake up. She got to sleep as much as she wanted, and I know that tonight won't be fun.
The boys are being absolutely wild and loving every minute of it. I'm so happy they are happy.
Friday, July 8, 2011
Pics
I wish I could post the video I made of Ilse's first real tummy time, but somebody ruined the postability of it by announcing they didn't have any clothes on. I won't say who. However, we did discuss at our breakfast table this morning having a mostly naked day; except I, who was already dressed and ready for the day, declined. Eventually all the menfolk around here got dressed. :) Ilse, of course, was already lovely in her outfit.
And here's a video of Ilse's famous (to us) Chin Quiver. It took a long time to get it out of her; she used to do it constantly. It makes my heart melt.

















