Things I could write about

I want to go to bed. It’s late. But I don’t want to forget the list of things in my head that, in an ideal schedule, would be able to be mulled over via blogging… today was a full day.

~Braska was off school, Kinlee “on” school, stayed for chapel with Braska at “the other school” to see her buddies.

~Dashed from chapel to Braska’s parent/teacher conference. It lasted 2 hours. Not bad, but not fully happy. Topics: reg ed time, transitions, behaviors, motivation

~Then ran back across the county to “the other school” to help with lunch and let B enjoy some more time with her friends at lunch and recess.

~Left from there to get downtown to Children’s for newest specialist on B’s team… urology. Trying to rule out medical issues for toilet training frustration. Ruled a few in. Topics: nonemptying bladder, wrong messages between bladder and brain, can be corrected and quick (per dr).

~Straight back to pick up K from Spanish, stopped by physical therapy location with one of very few PTs who works on what B needs help with.  Went by pharmacy for new med.

~Finally made it home to fix dinner and brief M on the happenings of the day and our new list of homework.

More on these later….good night.

Hot head sisters

We are home from school today. Our heads are really hot. And our bodies too. Dr A says no school tomorrow either,  so I'll miss my field trip. I don't like that! 

KiKi is hotter than me,  but she still smiles for mommy...

Tomorrow=Heart day + ear day.

Tomorrow is Braska’s 6th heart day.  She’s been all fixed up, cardiologically, for 6 years now.  Hard to imagine.

To celebrate, we’re going to take her back to the hospital and put her under general anesthesia just for fun. 

Not.

But she is going under.  She’s having new T-tubes put in tomorrow morning. We report to Children’s at 5:45am. 

I get up at 5am each weekday morning, but to get up and ready, get her up, and drive the 30 mins to the hospital, all by 5:45… that makes the morning a little earlier.  Here’s hoping I sleep well in the next 6.5 hours.

Have a great Thursday!

Look back and laugh: Going sterile

Back by popular demand, and because this topic has come up on a DS forum I like… here’s my guest post done for M’s blog, which is no longer in publication.  It’s about time we all have a good giggle, and M doesn’t mind if it’s at his expense, just this once.  For real… I asked.

From 9/2009~

I don't remember much about "The Great Snip of 2009". Here is what I do remember: They stuck a needle in my arm and told me they were giving me Valium, then I woke up in a stranger's driveway and immediately went unconscious. The following is RK's interpretation of that event.

______________________________________________________

After about 30 minutes, the nurse came to the door and said, “RK?” She looked around the waiting room and I motioned that it was me. She asked if I could come back. I was feeding Kinlee, so it took me a few seconds to gather up the bottle, the diaper bag, my purse, etc. and get to the door. As we walked back, the nurse told me they had given him Valium just before they got started, and he was still “pretty out of it.” She said I needed to help him get dressed. I was thinking that I didn’t know about the Valium or I’d have told him he is very sensitive to sedatives. They left that part out of the post op consultation.

We walked through the door into the procedure room and there he was, lying on the exam table. He was more than “pretty out of it,” he was unconscious. Practically drooling while he snored very deeply. It wasn’t his most sexy moment, though the Cardinals shirt with athletic supporter is an interesting ensemble. And no, I didn’t take a picture of that particular part of the day.

I wasn’t sure what I was supposed to do with Kinlee while I attempted put his pants on while he slept. So the nurse held her while I went back downstairs to get the stroller from the van. After I returned, having called Julie (Braska was at her house playing with her buddy Jack) to tell the already funny story and how it was going to make us later getting Braska, I strapped Kinlee in the stroller and set out to dress my unusually floppy husband. It should be noted that the nurse did not assist me at all. Now, she HAD put the jock on, thank goodness, so that’s good, but I would have liked some help.

Luckily M had decided to bring his flannel PJ pants (affectionately referred to as “comfy pants” at our house) because I can’t imagine attempting to put jeans on someone in that condition. The nurse had gone to get a wheelchair while I was working on the trouser task. “We’ve never had this happen before,” she kept saying. “We’ve never had to use a wheelchair before.” When I lifted up a leg to start the pants-on process, M stirred a little. I started to fill him in on the situation, even though it was quite clear that he wasn’t grasping it. But at some point during my description, he said, “Ah dun ned ah weecha. Ahken wahk jes fahn.” Ok, maybe trying to write the slurring won’t work, but imagine the drunkest person you’ve ever seen in a bad B movie and double it. He was WAY out of it. He clearly could NOT “walk just fine.”

He almost fell off the table at least 3 times while I was dressing him, mostly when I was trying to lift his rear end up to get the waist up where it needed to be. There was a bit of lift-n-drop, lift-n-drop going on, yet he slept, only rousing once to say, “Is it done yet?” He ended up in this position.

 

 

 

 

I told him it was over and we were going to figure out how to get him to the van. Again he said, “I don’t need a wheelchair.” Then he added, “Just sit me up.” I told him if he could sit up on his own, then we wouldn’t use the wheelchair. He tried, if you count a feeble grunt with no actual movement to accompany it. “Come on, just sit me up.” I didn’t comply, as it became obvious he was getting ready to be in a puddle on the floor. So I tried to shove him back up on the table more securely.

When the nurse returned with the wheelchair, she said, “He just needs to stand up, then we can get behind him.” I assured her he would not be standing up. She kept saying, “Muncher, Muncher! You need to wake up. It’s time to wake up. You can’t go through the waiting room like this.” Apparently there were a whole day of vasectomy patients behind us, waiting in the room that we’d have to pass through to exit. She didn’t want this picture in their heads before they got to the moment of truth of their own. “Muncher, Muncher! Please wake up just a little. I need you to wake up!”

M was not responding to all this encouragement from the nurse. He was snoring right through it all. But as we scooted his rear around to attempt to get him off the table into the wheelchair, he did manage to say, “I don’t need this wheelchair. I can walk to the van.” I ignored him. I ended up lifting him up completely, with my shoulder in his chest and him slumped over my back to pivot him into the wheelchair. The nurse helped by holding the wheelchair still. I probably shouldn’t have let him plop into the wheelchair quite so roughly, but there wasn’t much I could do about it at that point. I just about ended up in his lap from the momentum of him falling down into it.

The nurse gathered his feet up and straightened his head, like she thought it would stay upright, and then headed out of the room. I grabbed my things and pushed the stroller out behind her. She kept urging him, “Muncher, Muncher! PLEASE sit up straight when we go through the waiting room. Please wake up! You’re making us look bad.” I just followed and smiled at the men who looked nervously at our little parade as we passed through the waiting area and out the front door.

We went down the elevator, M sleeping soundly, Kinlee looking at him like he was green and had 4 noses or something, the nurse still saying, “This never happens. I don’t know why he won’t wake up. We’ve never had this happen before.” I just let her stew a little and didn’t say anything. When we got to the front door of the building, she waited while I went to get the van. I put Kinlee in her seat and brought the van up to the front door. The nurse wheeled him out to the passenger side door, and I told her I wasn’t sure how we were going to get him up high enough to get into the seat. M managed to throw in his 2 cents by saying, “I can get in by myself. Where’s the door?” He was reaching for something to hold onto, yet his hand was only about 3 inches off the arm of the wheelchair, missing it’s mark by over a foot. As much as this was funny to watch, I was kind of wishing he could actually give us some assistance. The nurse pushed him out of the chair from behind while I held his legs stiff so we could turn him with his rear to the van. Then I grabbed him around his thighs and lifted him, again quite roughly, into the van seat. I had thought to recline it so that he could flop back, so we just shoved his feet in enough to shut the door, I buckled him in, and the nurse said, “Good luck.” It wasn’t a comfortable position, but it worked.

I called M’s parents to see if Dad was available, because it was very clear that I was not going to be able to get him out of the car, up the steps to the house, and back to the couch or the bed. I figured since he was in the van, we could just head south 45 minutes and let them help me get him out and recover there for the day. But first we went by Braska’s school to cancel a therapy appointment we had in an hour, and we stopped at QT to get frozen cappuccinos (a fave of me and Julie) to share with her since she’d kept Braska for us. When we got to Julie’s, I left M in the van, in the shade of the driveway, and put the windows down. I brought out a blanket to prop his head up since it didn’t look comfy the way it was. I went in with Kinlee and decided we’d give M a bit to come around a little, maybe avoiding a trip south. Julie and I chatted for a while, about 45 minutes, as I watched him out the front window to make sure he wasn’t stirring around or anything. He didn’t move a muscle.

I loaded up the girls, called Mom to say we were coming, and stopped by home to grab some things. By the time we were in our driveway about 5 minutes later, M was a bit more conscious, asking where we were, saying again that he was fine to walk into the house by himself. He was holding his head up a bit more. But he still couldn’t move his limbs well, and I didn’t want to chance him ending up on the garage floor for the remainder of his recuperation.

We headed down to his parents, and by the time we got there 45 minutes later, almost 2 hours after leaving the clinic, he was more lucid. Dad came out to help him in to the house, but he was able to bear most of his weight on his own.

There were hours more of sleeping, bags of frozen vegetables that his mom deemed “contaminated” and lots of crude jokes at his expense.

 

Footnote: 6/8/2011

This story still makes me chuckle almost 2 years later.  From what I hear—from those who have this on their Top 5 fave stories ever—it’s better if you read it out loud to family.  So feel free… let us know if anyone harms themselves falling out of a chair. Not that we’re legally responsible for such things, mind you, but we’d love to know about it.

Eyes can be scary

Today was the appointment with Dr. C to discuss (again) the issues Braska has had for almost two years now.  The head tilt and tip.  For lack of a better description.  I wish I had time to find pictures, but if you’ve been around long, you’ve noticed that she looks down her nose at everything, literally.  (I just peeked at her blog and saw that the picture posted earlier today of her at the Eye Center’s front desk shows the tip and tilt, both.  If you look, she’s looking into the desk area, but her head is aimed as if she’s looking up at the ceiling. Her eyelids look closed because she’s always looking out of a little space right above her cheek.  The pictures of her scraped up face and head from last week show it as well. Rarely do we get a look with open eyes straight ahead through the glasses.) She tips her head way back and almost faces the ceiling to see something straight in front of her.  She also tilts her head to the right shoulder as well.  In the last year, we’ve noticed that even WITH her glasses, her left eye is crossing inward quite a bit.  This is supposed to be managed with the prescription on the glasses, but it seems to have become worse.

It’s been one of those things that drives me nuts, but that I always feel bad getting frustrated about since it feels like it’s just because I’m vain about the zillions of pictures that I take with her nose in the air.

The reason why she does this is that she has nystagmus, or “wiggly eyes.”  This is just one of a few diagnoses that she has related to her eyes.  It’s been present from birth, though we noticed it more at around 4-6 months and then progressing more in the last couple years.  It’s gotten really severe, in that she often is tilting or tipping at 45 degrees, which is pretty significant when it comes to the problems it could create with posture and other issues.  The tilting or tipping is to find her “null point,” the place where the eyes do a minimal amount of moving. She is adapting by positioning her head because she is unable to control them as she wants to when she is looking at things straight on.

So today, after “stumping” our ophthalmology team for a while, or at least presenting in confusing ways during the last several exams, they were able to pinpoint that she has what is called Manifest-Latent Nystagmus.  This is good news because at least now we know where to look for our next step.  It’s not AS good, because the next step is most likely surgery. 

Granted, we’ve been through more than a few surgeries, open-heart being the most significant, and we’re not really afraid of procedures in general.  BUT for some reason, this one has had me more hesitant than the others.  Even the heart.  Because it’s her EYES.  I have real trouble considering the results of something going wrong with her eyes.  The heart HAD to be fixed for her to live, and somehow, that wasn’t so scary. It was the only option.  In this case, it does appear that it NEEDS to be done, also, but I still wish they weren’t going to mess with her eyes.

Dr. C, though she is VERY experienced and a lead of the eye center at Children’s, has not done the Modified Kestenbaum procedure that is required to help correct Braska’s issue.  But another doc in the group has done some and we’ll be seeing him on Monday morning.  Dr. L will be the newest member of our specialist team.  Dr. C also feels that the crossing that we see a lot in the left eye is also a result of the MLN issue and not actually true strabismus/esotropia.  I’ve read a lot about this today, and there seems to be a lot of evidence to back her up.  That’s why she has letters after her name and I don’t!

It was explained to me that the adjustments to the eye muscles will be somewhat rotational instead of the typical horizontal or vertical.  So her particular issue and the needed repair are definitely more rare than most similar issues.

Yay.  Because we can’t do anything normal around here!!

Dr. C did confirm with me that this is NOT a DS thing.  This is a nystagmus thing, and many kids have nystagmus without having DS.  It is not uncommon IN kids with DS, but what she’s dealing with now is not one of “those things” that just comes with having DS.

Chalk it up.  Her feeding issues are not DS (FAR beyond the “norm”), as well as a few other fun things that are part of life around here.  And now we add this new diagnosis…manifest-latent nystagmus.  No big deal, just something to learn about, address with the proper treatments, and continue to move on.

I’ll know more about timing for the repair after Monday’s appointment.  We appreciate your prayers for our girl and for our team of great doctors.  I’m very thankful that we have ready access to such a great facility and group of physicians.

31 for 21: More about eyes

If you missed the previous blip about Braska’s eye appointment, you can start here. This is gonna be a long one, but if you have an interest in tots and odd vision issues, this might be, well…interesting.

As I mentioned as a teaser the other day, I had a couple of concerns that caused me to make the appointment we had on Monday. One was the tilting chin-up habit that Braska’s been perfecting for over a year now. Though it has become more persistent and more extreme in the past few months. The other issue is that she has been unable to sit on the couch and remain engaged in her shows. She has been requiring to be closer to the TV than ever before in order to stay tuned in.

She has her yearly ophthalmologist appointment with Dr. C coming up in early December, but I decided these things needed addressing sooner than that. Plus I wanted to make sure that if we needed new glasses, we could get that done with what was left of our flex spending account.

So off we went… Dr. S (optometrist in Dr. C’s office) asked how we were and what was new, and I launched into my info-sharing mode, without overwhelming or sounding fatalistic. A delicate balance, but an important one, as I learned in years of hearing doctors express frustration about the way people present issues back when I was managing practices. I explained how she looks down her nose at everything that required detailed attention. I reminded him that we had addressed this previously with Dr. C and she didn’t feel it was visual, but instead thought it might be a strength issue and recommended we talk to PT about it.

After last year’s appointment, we DID investigate, via a variety of other modalities, the cause of this habit of hers. We talked to the PT, and it was determined after evaluation that this was not purely a core strength issue, but that since Braska does, in fact, have a VERY weak core, we would focus on trying to increase work on that area in order to help her posture and ability to hold her head properly. We also talked to OT who also made adjustments to their exercises and activities to include more things that caused her to focus in various places and at different distances, hoping to help with her visual motor as well.

So neither PT or OT found the issues to be directly in their wheelhouse, so to speak, but they both agreed to assist toward the goal.

I have felt from the beginning that this was more visually related, as in Braska’s vision—her ability to see, not just visual motor. She has nystagmus, which is not uncommon, and looks like her eyes are wiggling back and forth when she’s focusing. This wiggling is much more easily controlled when she is looking down.

For those of you around from WAY back in the day, Braska was totally enamored with her hands for quite some time around 3 to 5 months of age. She was evaluated by a visual therapy specialist and it was found that she was finding her “null point,” or the place where she could make the nystagmus stop and see most clearly. She generally held her hands down by her chest and peered at them for long moments at a time.

What I found when I did my own unprofessional testing recently is that Braska’s nystagmus is once again still when she’s looking down her nose with her chin tipped up high to watch something. When we hold her head in a proper posture position so that she’s looking straight forward at the intended target, her nystagmus is quite obvious and she doesn’t stay focused on the target for long without looking around and then returning to the target.

The other element of this head-tipping situation is that when I held her in the proper position, encouraging her to look straight at the target, she had to raise her eyebrows to get her eyes to open enough to see straight ahead. Like she didn’t have the strength to open her eyes all the way. She CAN open her eyes, don’t misunderstand. But in order to watch one of her videos or follow along with a book for several minutes, she cannot hold her eyes open in that position without looking away, resting by looking down, and then trying again.

These findings brought our OT/feeding therapist to encourage us to have her evaluated by an OT who has specific experience with vestibular and visual motor. We did have this evaluation done, and the OT was great. She found what we’d suspected, that Braska’s low tone (hypotonia, common in DS) is causing her to struggle to work her muscles around her eyes and in her face to USE her eyes as she should. Crazy stuff, I think. This OT recommended specific vestibular therapy and strength exercises focused on the muscles used around her eyes. Unfortunately, our insurance wouldn’t cover these things at that location, so we have to start over again somewhere else and hope we get someone who knows about this sliver of the OT element.

I could go on for days, and it might seem I have, but I’ll sum this part up like this… things that don’t seem right often aren’t. I was convinced that this was not just a quirky behavior or low-tone slouching issue. And as it progressed, I insisted it be investigated. I’m very glad I did. Though we’ve still got some ground to cover to make headway, I’m pleased that professionals are seeing the problem, addressing the underlying issues, and are willing to help us find a plan that will benefit Braska. That’s the primary goal, of course.

Dr. S was very open, understood where we’ve been with this, asked great questions and took lots of notes. He will be reviewing the info with Dr. C and when we see her, and probably him also, in December, we’ll be going with photos and video in hand of Braska in action with the tilting issue, per his request. She did “perform” well for Dr. S on Monday, as he put in a video on the TV in the room and she did just as she usually does. He played with her position a bit—it was Elmo so she didn’t mind—and he tried to hold her head up, manipulate her position, etc. He was able to get a great example of how she lifts her brows, how she cannot stay focused on the show when forced to watch straight on, and how her nystagmus changes with her position.

All this info will be compiled and we’ll come up with a plan soon.

Seemingly uninteresting in the situation was my second concern, that she has to sit so much closer than she used to when watching something. He also did some super special scientific testing on this while she was watching Elmo, rolling her forward in the stroller to see where she engaged. And after dilating her eyes and seeing that her prescription has changed quite a bit, that fit as well.

So we have answers, or at least the right start toward finding the answers. That’s good. I felt great about how the appointment went, and I let him know that.

Now we wait for the new lenses to be done. We evaluate how the updated prescription helps, and we return with new date in December for consultation with Dr C on the situation. I’d like to avoid another surgery, but it’s always a possibility. We’ll hope that we can come up with a non-invasive approach that works.

If you have any questions about this, don’t hesitate to ask… eyes are something we’ve had experience with. She’s had her glasses for almost 3 years! Wow!

The germ count

As of right now, we are healthy.  That’s very nice. The girls are well—or as well as Braska can be with what is apparently allergies at this time of year, so still snot persists—and they are nearing their “normal” demeanors again. 

Right at the moment I can’t remember what I’ve updated about on here and what I haven’t and I have very limited time to throw some info up here, so I won’t go hunt it down. If this is a repeat, please pardon me.

Braska is due for tubes in her ears. We learned this at the end of February and were not at all surprised.  Though she made it her first three years of life with not a single ear infection, she had at least 4 in the first 3 months of school, so tubes are in order.  The ENT recommended that we get a sleep study first to see if we would just do tonsils, adenoids, and tubes all in one anesthesia trip. Sounds good to me. The sleep study was at the end of March. (Still no results…grrr. That’s another story. I’m going to be making another in a long string of calls this morning.)

To my chagrin, the ENT either has way too many patients or way too little time scheduled for OR procedures, because suddenly, when we wanted to schedule for a surgery date, they gave us June 2.  Not acceptable.  So we began to check out some options, including restarting with another ENT and still getting the whole process done in less time. But in the nick of time, I was told that there was a cancellation and we could have the slot, the first week of May.  I took it, and we resigned to the fact that we’d have to wait til then for the procedure.

Due to our string of ear infections, strep, hand/foot/mouth disease, and random other fun germies, our pediatrician recommended this week that we keep Braska out of school until her surgery, just to be SURE that we don’t have to postpone due to another little illness.  If we have to reschedule, it would probably be December before we get in, by my calculations.

Therefore, this week I’ve been talking to lots of people at her school, the district coordinator, therapists, etc.  We’re trying to work out a way for her to go to school for therapy only and in environments that we can control as far as exposure/cleanliness.  So I would take her up for therapy services at regular times for the next few weeks.  At this point, we have speech on the calendar, but I’m waiting on the rest.  OT/feeding is my primary concern, since Braska’s been making progress with Sue, so it’s the one I’ll work the hardest for. (Excuse me…for which I’ll work the hardest.   Good grammar can be so formal.)

We’re hanging out at home in the meantime.  The girls are playing fairly well, though they sure do get on each others nerves lately, and mine, and Belle’s, and vice versa in all cases…close quarters we have here, and when we’re all trying to accomplish something different on our personal agendas, it gets heated.  We’ve made a few trips to the library, with limited handling of books.  Braska has asked almost daily to “go school today?” and “fun at Jack’s house!” (She actually says it like that…there’s nothing but fun at Jack’s house apparently!)

For now we’ll take it easy, enjoy the nice weather, though we can’t really use the beloved attic fan like we would prefer since Miss Snotty only gets worse with all the crazy high pollen lately.  We’ve had her on Claritin which didn’t seem to do anything at all.  We now have her on Zyrtec, but it appears to make her really crazy inside and she acts out strangely.  So I’m not really sure we’ll continue.  She hasn’t had it last night or today, so we’ll see how she does.

That’s where we are. Not all that bad, not all that fun. But I’ll take it over antibiotics and coughing and fevers and whining (more than usual, on Kinlee’s part) any day.

I now return you to your regularly scheduled day. Thanks for tuning in.

Doctor Therapists Realtor

I knew this was gonna be a busy week, but today was a little ridiculous.

9 am: Braska pediatrician appt. Just to get established and make sure she had all the right info. It was pouring rain when we left, and I'm no good at kid and rain combinations. We made it barely on time. My first concession of the day was to go out in schlumpadinka fashion. Yep, I've gone there. Capris, neat shoes, and cute top--didn't happen. Yoga pants and T was it. What has happened?!?

10:15 am: Back to the apartment. It's so darn trashed there's not anywhere on the sectional to sit down. But I feel rough, so it's plop in the recliner for me while Braska plays. Dealt with some work and emails but mostly I just sat still and tried not to be dizzy.

11:00 am: Knock at the door. The PT is here. Forgot about that one. I sent an email to find out when my appt was, but didn't get a response. Darn email keeps going to spam. Ok, welcome to disaster central. Braska did great, made some big strides with pulling up to her knees at the couch. But I could hardly keep my eyes open.

12:10 pm: Feed the kid in 3 minutes. (Thank God for tube feedings at times like this.) Rock her for a minute, put her to bed, and collapse into bed myself for a quick nap. But it doesn't happen. I can't nap. I always just race through the things I need to do and what I'm NOT getting done by resting. I get so mad that I can't go to sleep that I end up more agitated every minute. I laid there for about an hour and closed my eyes even though I couldn't sleep. We've got so much to do still today! I need to get some energy!!

1:10 pm: M comes in from work for lunch. I get out of bed. I've made no lunch obviously, so he has a pudding cup and some pretzels. Thank goodness he's not a foodie. We chat a minute. He gets Braska up because speech will be here in a few.

1:30 pm: Jocelyn comes for ST. Braska plays and cooperates some. She's not much for mimicking on command yet. But she had a good time. She likes Miss Jocelyn. M heads back to work at 1:45.

2:30 pm: We leave as Jocelyn does, heading out to the realtor's office. I had texted my sister Rachel to pick me up some food on the way to meet us there since I hadn't had a chance to eat yet. She came along to corral the kiddo while we visited several places.

2:45 pm: We met up with Sandra the realtor. Headed out on our tour of 6 places. We ruled out 3, I'm on the fence about 1, and we like 2. That's not bad overall. Houses in this price range are going quickly here, so a few that we had wanted to see had already sold over the weekend. I was pleased we found a couple standouts at this price point. It was really hard to actually walk through places that we were considering. I love looking at houses. Love it! But we are downsizing, and that's proving to be more of an adjustment than I expected. We loved our 2-car garage, but no more. We loved having 2 baths, but no more. We loved our spread out room for us and guests, but no more. It will be fine. We'll have room to be, but it will be an adjustment for sure. Not to mention the pool....... but it's ok. It really is. It'll be less for me to keep up with, and I like that. I actually was pleasantly surprised, as were Rach and Sandra, at the good places we saw. I was afraid everything would require a great deal of work, but two of the options are just about turn-key. That's important since we're trying to get all this done and moved in by 8/31...the end of our short-term lease in the apartment.

5:15 pm: Back to the realtor's office. We head home. I collapse and hand Braska to M. The local DSA meeting is in 45 minutes, but nope...just can't do it.

And from that point on, my mind races. I'm replaying every bedroom, bathroom, kitchen, finishes, carpet, neighborhood, etc. I'm betting there won't be much sleep tonight. My brain doesn't have a turn-off switch when I need it. So I pray God will show us "our house" just like he did 4 years ago, clear as day. I gleaned a few little hints today, so maybe more will come. We go back tomorrow night, me and M, so he can take a look at the top 3. My hope is for a clear choice or more rule-outs.

Two hospitals in one day

Mommy and I went to St. Louis again yesterday for some more doctors and stuff. We left very early in the morning. This time, we went to a different place than where we usually go. We went there because they have a big place just for kids like me that are little but need glasses to see better. Mommy told me that when I get my glasses that I will see all kinds of things I don't get to see right now. I'm not sure how that works, and I don't like when they put the glasses on my face to try them on, so I don't know if I'm gonna like this thing of wearing glasses.

First we went to St. John's so we could pick out my glasses. Miss Mary helped us, and she was very nice. Mommy put some of them on my face, and they kind of make my nose feel funny. She decided which ones she liked, and I told her they were my favorite too. And guess what color?? Pink, of course! We will have to go back and get them in a couple of weeks. I sat like a big girl while Mommy was paying for everything. There was alot to look at in there!

While we were waiting to get done, Mommy asked Miss Mary about our new little friend Levi who was in that hospital, but he got moved. I'll tell you about him in a minute.

After we got done, we met Auntie Rachel for lunch since we were close to where her new job is. She works for a different hospital, but we thought two in one day was enough, so she came to meet us at the lunch place. I played with the shiny paper that the chips were on, and then I sat with Auntie Rach for a while and tried to grab her pizza. Mommy said I could eat some if I wanted, but I didn't...I just wanted to play.


We finished up with lunch real fast and went to our regular hospital called Children's. I met with another nice Miss Mary who talked to Mommy about how I eat. She said they were going to do something called a swallow study, but Miss Mary decided pretty fast that I didn't need to do that. I swallow just fine, thank you!

She watched while Mommy fed me some, but I didn't really want to eat. Then Miss Mary gave me a thing called a Crunchie. It was pretty fun to hold on to and after she put it on my mouth, it kind of tasted good too.


I even held it by myself, which made Mommy all surprised.

After we finished with Miss Mary, we had some extra time, which was very good. We went to find our new friend Levi. Mommy knows the story better.

I knew a guy in high school from church camp, Michael, and hadn't really thought about his family in probably 15 years. My parents have kind of kept up with them. Earlier this week, Michael's wife Carrie had a baby, Levi, who was born at less than 3 lbs. He has some major heart issues and will need multiple surgeries, but currently, they're working to get him to at least 5 lbs before they can consider operating. When Carrie was discharged from the hospital, they transferred Levi over to Children's. Since we were at both St. John's (where he was born) and Children's on the same day, I felt strongly I was there to make contact and offer a little encouragement, even if I hadn't seen them in so long.

I'd never met Carrie, but I waited in the NICU waiting area until she and both her mother and Michael's returned from grabbing lunch. It was nice to see Michael's mother again, and Carrie and her mother were both very sweet. I talked with them a little bit, just trying to encourage her. She told me the doctors had given them the possible scenario that he might not ever come home, and they asked her and Michael to consider the possibility of taking him home soon to simply spend what time he had as a family. How can that kind of a decision be made? How difficult that must be?!

So your prayers on Levi's behalf are appreciated. I'll be checking in on them again when we're back there soon if he's still inpatient.

After we checked on Levi, we went down to wait to see Dr. R. I spit up on my shirt, so Mommy just took it off. It was alot of mess. That's why I've got no shirt on. I thought it was pretty fun to play around like that. Mommy kept a blanket on me so I would be "proper."


When they put me on the silly scale, I was 15 lbs 0.8 oz. Finally made it to 15!! Mommy was happy about that. Then she put me in clean clothes and she was happy again. Dr. R thought I looked pretty good, and my button too. He said Mommy could start feeding me different. They talked about milk and something called Pediasure.

When we came out from seeing Dr. R, it was snowing! Mommy called Papa Beagle to see what the computer said about the weather, and we decided not to go home. Mommy doesn't like to drive in the dark and Papa said it was gonna be slippery too. So we decided to go to Grandma C's house for the night. We watched the Bears game with them and Grandpa J played with me by the neat tree they had in their big room. It had lots of lights!

Today we came home before it got slippery again. Our house got lots of snow! It was good that we didn't go home during the snow, because we saw a whole bunch of cars that slipped off the road during the night. But we made it safe!

Still don't wanna

So I've spent alot of time this morning looking over information about G-tubes, specifically the PEG process, which is what our doctor would use. Braska doesn't seem to be improving in her eating, and I'm just getting tired of the battle. I feel like that makes me a bit of a mothering failure, to be honest, yet I know that I've tried everything I can for 9 months now. I just hate to put her through another procedure, and I guess I've become a bit paranoid about the possibility for complications. As I told a friend yesterday, they say it's routine, but what's routine? How can poking a hole in my baby's tummy be so routine?

I guess this is just another one of those situations when being the adult is no fun. So many people say that their kids did so much better once they got rid of the NG and went to the G-tube, but then there are a few who seem to simply have a different set of problems. And if I'm going to have problems anyway, I'd rather do it without having to put her through this royal poking. I'm still struggling with the fact that my gut is telling me not to do it. But what is this gut anyway? My fear of the unknown, more work, new things to learn about how to care for her? I suppose I'm not so sure I trust my gut anymore, or at least about this one thing. I think I've probably thought about it too long.

When I have a big decision to make, I like to look at the pros and cons....usually making a list of them. (Thanks to Mom for that habit.) Even if I know on some level there is really a right way to go, I like to be sure I've considered all the options and made the most educated and thoughtful decision possible. My husband doesn't particularly like this part of my personality, I don't think, but it helps so much when he'll actually humor me and have a full-on, weighing-the-options, decision-pondering discussion with me. But we haven't had one of those in probably 2 years, so I'm out of luck there. He says just do it... get the G-tube, so she won't have a tube in her nose and tape on her face. Good points, sure, but considering the alternative, I just don't know.

In so many parts of life, I'm decisive. When it comes to work, I can make important decisions in record time. I guess I'm just finding that decisions about my child are way different. Not that this should be all that surprising, but still. I just feel like I'm on my own, and that sucks. Plain and simple. I keep praying about it, and I kind of think God is just rolling his eyes, saying, "I'm giving you every possible sign I can!" She doesn't eat enough. She won't drink hardly anything, and she doesn't seem to care. I've made every excuse. She always seems to be just on the brink of some great improvement. We start with a new feeding therapist next week, the guru of our area, so I've been holding out for that. But truth is that even improvement won't be enough at this point. She's got so far to go. Maybe she won't need it for long, but she does need it.

So I guess it's just me... I'm the hold up. I think it's time to give up the filibuster and get on with it. Suppose I should call Dr. R and see what's next.

Mommy report: Biopsy results and a GREAT post

I got a call from Dr. R (the GI) last night, and he said the rectal biopsy was negative, showed her nerve cells are all as they should be, so no Hirschsprung's here! Good news for us! I knew it wouldn't be, as she just didn't fit the symptom list consistently, but it's good to know for sure. He said that since she is improving, although slowly, with her feeding, we'll give her a few more weeks and reevaluate then regarding the gastrostomy (G-tube) procedure. I still hope we can avoid it. Her lab work looked ok, just a few things that were only the itsiest bit off, folic acid and B12, so were going to follow up with Dr. Y, her pediatrician to keep watch on that.

Also, I want to encourage you to take a few minutes and read this post from Michelle at Big Blueberry Eyes. I know many of you read her blog regularly, but she does an exceptional job at responding to some questions about raising a child with DS, and I think it is SO well stated that I encouraged her to see about publishing. If you have now or ever do have a friend who struggles with a prenatal diagnosis of DS, or even finds out at birth like we did, please share this with them. I think it could save some beautiful little lives. Plus, it is good for us parents, too. Fantastic, Michelle!

Mommy report: Good GI appointment

We met Dr. R, the pediatric gastroenterologist, today for consulation regarding the G-tube. My issues with it are really just trying to determine how to decide when it's time to look that direction. He was very informative about what it entails and it's risks and benefits. But the good news is that he said, although she would be a candidate, she is not at the point where she NEEDS to go that route. That's good, as far as I'm concerned. Since she is not having any necrosis concerns in the nose or throat, and since she doesn't seem to eat or nurse any differently when the tube is in or out, we are not at the point where we need to get the NG out for good right away.

She has eaten (breastfed) much better the last few days, so that is encouraging. She was going to spend this upcoming week with Grammy Jan so I could get some much-procrastinated work done, but since she's doing better and being more consistent, I'm not going to give up on her yet. Dr. R agreed that we should continue to work with her on this and other oral therapy helps and touch base with him in a couple weeks. He did order some blood work, and we had it drawn after the appointment.

On a separate topic, but still GI related, he is concerned about her constipation history along with the DS diagnosis, so he recommended that we do a biopsy of her rectal tissue (ewww and ouch!), and we've scheduled this for Monday since we're already down here. We've made arrangements to stay the extra day (Thanks tech group for being so darn flexible!!) so we'll be able to get that taken care of Monday morning. He's looking for Hirschsprung's disease, or hopefully ruling it out, but I hope it's not too traumatic. They don't sedate for it, but it's supposed to be very minimally uncomfortable. I have to say that after researching this quite a bit, I really don't think she has HD, but since the procedure to verify that is minimally invasive and quick, we'll go ahead with it.

Thanks for all prayers and well wishes. I am praying hard that she continues to feed well and even better all the time. I'm optimistic that she can overcome this feeding stuff without resorting to the G-tube, but I'm aware that it might be necessary at some point. For now, we'll keep working on the progress we've started.

And now, it's feeding time again.

Mommy report: Good reports all around

Here's a quick rundown of all the recent appointments and such...

Dietician--Miss Tara was great. We're working on a plan to do continuous feeding overnight via the NG and then take it out during the day to work on spoonfeeding, trying the bottle, etc. We'll also be adding olive oil to her spoonfed foods to bulk up the calories as well as continuing to concentrate the breastmilk by adding powder formula to it for extra cals. And she gets to try some avocado as well...we'll see how that goes. The goal is to avoid needing to go to G-tube, since she's been on the NG for about 5 of her 6 months.

DS specialist--Dr. G felt she was doing very well. She said that considering the surgery at 3 months, she was progressing very well. They drew labs for thyroid, but we don't have them back yet. I really liked this dr and was pleased with her attention to a thorough exam. She gave us a script for stool softener for Braska to see if that helps with her 5-6 days "off." She recommended we see ENT at one year. That's when we'll follow up with cardiology and the DS center again too.

Ophthalmology--The dr said her refractions were right where they should be. She does have the mild nystagmus (wiggly eye) which we knew, but she said she's not sure yet if it will affect her vision later. All other aspects of her eye exam, including dilation, were very good. We return at one year for recheck of the eyes.

Pediatrician, Dr. Y--He is pleased that we're finally hooked up with everyone and have the input we need from the specialists. We have a plan in place and all of us are glad about that. He said she looks good overall, so we'll watch the weight when it's time to make the diet changes, but for now we keep doing what we're doing. She got her 6 mo shots, and barely made a whine. What a champ.

So we actually don't have to go to an out-of-town appointment for 6 months, unless something changes, so that's awesome!! We see Dr. Y next for her 9-month check. I would never have believed 3 months ago that it would be possible to not see a dr for that long! God is SO good!