HAPPY 1ST BIRTHDAY, ELLA!!

Our sweet little Ella is ONE!! Happy birthday, baby girl! We love you sooooo much!!

Things are Things

A couple weeks ago I had to break the news to Kaylee that the American Girl doll she really wanted was sold out for good. Basically I told her, "get used to it, there will always be things you want that you can't have," but in much more sympathetic language. Or so I thought...?  A few days later when she was whining that "I never get what I want" I started to tell her the same thing again but she stopped me and said, "I know! I know what you're going to say, 'things are things. Your whole life will be like this.'" Hmm, interesting interpretation. So now when she starts to complain I just say, "you know, Kaylee, things are things..." and she either tries to not laugh or gets mad and storms off. Either way, she stops complaining. :-)

Crawling!

3 weeks shy of her birthday, Ella, with quite a bit of prompting, finally crawled a few steps! Until now she would only ever take one little step on her knees before belly-flopping, lunging, scooting and rolling to get where she wanted. That still seems to be the preferred method of movement, but my guess is now she'll start to crawl more and soon be all over the place. Gate steps, here we come again!

Ella-MRI update

We finally got Ella's next MRI scheduled - for Jan 7th! That's the day both Kaylee and Andy go back to school after winter break. They initially had her scheduled for mid-March, but when we said her pediatrician wanted it sooner rather than later, they said the earliest available was 1/7. We've now left a message for her pediatrician (who was off today) asking if we need to try to get it done sooner or if that date is fine with her. Ella's 1 year appointment is scheduled for Jan 14th, so if we do have her MRI done on the 7th, hopefully the pediatrician would have the results in time for us to go over them at that appointment. So for now, just more waiting!

On another note, Ella is super congested right now, so it's a good thing her MRI wasn't scheduled for this week! It started a couple days ago, but yesterday got worse, then last night she couldn't stop coughing and woke up crying. Jamie steamed up a small bathroom and held her in there for a while around 11pm to help loosen the mucus, then we put Vicks on her and a humidifier in her room. She was back in bed around 11:30/45 and managed to sleep until 8 this morning. Poor thing was pretty miserable today with a red/raw nose. Andy's preschool Thanksgiving Feast is tomorrow and he really wants Ella to go, but I'm not sure she'll be up for it! We'll see how she's doing in the morning. So far so good tonight (more Vicks and humidifier again), but it's only been a couple hours since bedtime.

Another tooth for Ella!

On Saturday I noticed Ella has another tooth!  Looks like it popped through a day or two before that.  The bottom left tooth next to her middle teeth.  So she's up to 7 now!  It's hard to get a peek, but I'd guess the same tooth on the right side wouldn't be too far behind.  She's going to have a whole set of chompers before her first birthday!

Kaylee's ears - update

Kaylee's rescheduled surgery appointment was this morning. Unfortunately it didn't go as well as hoped. There was not any fluid in her left ear, so they did not put in the tubes (or even cut in to look in the right ear). That means her hearing loss is most likely due to something with the ossicles (little bones in her ear) not transmitting sound completely. Fortunately, the loss is apparently not bad enough to worry about hearing aids, so they just want to keep an eye on it for now, and to make sure it doesn't get worse. They suggested having her teachers seat her somewhere that her good ear would be towards the teacher, just to make sure she can follow along easier, but all feedback from her school is great so we don't seem to need to worry about that yet.

Kaylee, like Ella, also seems to get pretty sick from the anesthesia, so she didn't have a very good time for at least 2-3 hours after she woke up. They gave her some anti-nausea medicine before we left the hospital since she was sick at least 3 times while we were there. It seemed to help, but it didn't completely stop her sickness. By about 2pm, though, she was bouncing off the walls like usual and since seems to be completely back to normal. Other than pain medicine as needed, ear drops for a few days and making sure to keep water out of her ears until we see the doctor again (in about a month), I guess we are back to the usual routine with her.

No updates on Ella yet. We need to call tomorrow to try and get the MRI scheduling sorted out.

Recent Conversations with Andy

Some conversations with Andy from the past couple weeks:

Me: Andy, do you have a dirty diaper?
Andy: No, but don't smell.

*****

Andy came up to me with a little stamp Kaylee had gotten at our fall festival.
Andy: Mommy, can I stamp this on my hand?
Me: It's Kaylee's new stamp.  Why don't you put it back and when Kaylee gets home you can ask her; she'll probably let you have a stamp on your hand.
Andy, after pausing a moment to think: Mommy, can you close your eyes?
Me: why?
Andy: just close your eyes and I will go to the play room and come right back.

*****

Andy likes to turn on the lights and fans.  In Ella's room yesterday he turned on the fan and it was already cool in there, so I pulled the chain to stop it.
Andy, in a mad voice: I want to cut that string!  I want to put on butterfly wings and you tape them on me so they will stay and I will fly up to that string and cut that string so you can't turn off the fan anymore!

2 little ones

Andy loves to get in Ella's crib in the mornings & after her naps to play with her before I get her out. They both love it. These pictures are from yesterday & this morning.

Girls' Medical News

Kaylee: After 3 weeks on antibiotics to hopefully clear any fluid in her ears, she went back to the ENT yesterday. Her hearing test results were the same, but the ENT still thinks there is fluid in her ears based on the stiffness of her eardrums and the rareness of the other possible middle ear conditions. He said it could be a very thick fluid that won't drain on its own (glue ear), and that it has been there since birth. She is scheduled for surgery on 1/3/14 to make a small incision in her eardrum and drain any fluid on both sides. If the fluid is there, he will put in tubes while he is in there. If there isn't fluid, he will do nothing (and the eardrum should heal in about 3 days) and that would leave one of the more rare conditions, such as a stiffness of the tiny bones (ossicles) in the middle ear. I'm not sure what the next steps are if she doesn't have fluid in her ears, but we'll figure that out when/if we get there. They will have to put her to sleep, but it sounds like a very light sleep with gas only and she will wake not long after removing the mask. The good news is that if it is just fluid, she might have normal hearing when it is all said and done.

Ella: She went back to the pediatrician today. Unfortunately, her head circumference has increased another quarter inch since her last visit about a month and a half ago, so based on that result her doctor still wants to get the MRI done. We should get a call about scheduling that in the next few days. She said it is most likely/hopefully just benign hydrocephalus where the excess fluid is outside the brain and just means she will have extra cushioning around her brain and will have a bigger head (meaning, we do nothing). Of course, it could also be hydrocephalus inside her brain ventricles which is bad, or some other growth in her head, and if something like that is found we'll have to go to a neurosurgeon. Considering she has no other developmental issues, it seems less likely to be one of the bad options, but we won't know until we see the MRI results. Like we've said, that will involve general anesthesia, but now that we are aware of her airway condition, it should be manageable and safe, although not what we were hoping for.

Thanks yet again for continued prayers.

Waiting on the doctor

Ella was checking out the view from the window while waiting on the doctor to remeasure her head.

Further Ella Update

We saw the more specialized pediatric ENT down at Scottish Rite yesterday. Based on what we told him and what he saw, he feels that Ella should grow out of the tracheomalacia by 2-3 years of age. He had some concern that the condition could be caused by a heart or artery defect putting pressure on the trachea, but he called the radiologist at Northside to have them check the fluoroscopy images and fortunately ruled that out. The only thing we really need to be careful of is when she gets chest congestion during a cold. The heavier she has to breathe, the more the trachea will collapse and we could end up in the hospital with her. The doctor was glad we don't have to leave her in daycare, because she should be less likely to catch as many colds. He does prefer to follow these types of cases, so we have another appointment in 2 months just to make sure nothing is worsening.

Jamie also talked to her pediatrician after we got all of these results. Now that we have the tracheomalacia diagnosis, she was less concerned about getting the MRI done. I don't think she told us this before (probably to avoid planting any panic seeds in our brains), but one possible symptom of hydrocephalus is vocal cord palsy, so it was possible that Ella's honking noise was due to pressure on a particular nerve due to fluid build-up in the brain. Now that we know that isn't the cause of the honking (and given what happened during the sedation at the last MRI attempt) she just wants to have her come in for a quick head measurement check. If her head hasn't had any significant growth then we will just keep an eye on things and recheck it again at her 1 year appointment in January. If it has gotten bigger, though, she will most likely want to do the MRI. The head measurement appointment is scheduled for next Tuesday.

Kaylee's audiologist appointment is Monday of next week, so we will hopefully have definitive plans for both girls by the middle of next week.

Halloween

Guess who chose our pumpkin carving design this year?

A few fall photos

Me and the kids at Burt's pumpkin farm


Pumpkin photos! The one of all three is pretty much how all the group photos turned out. Sometimes two would be smiling, but I don't think Andy was in many...he's pretty anti-photos at the moment, unless he specifically asks to have it taken! At least Ella cooperated when it was just her and the pumpkins. :)


Ella is 10 months old!!!


This is Andy at our neighborhood fall festival. He wanted me to help him get a snack (read: cookie or cupcake or candy or all of the aforementioned), but I told him I wanted to take some photos of Kaylee and Erin getting their faces painted first. He crossed his arms and said, "that doesn't make any sense." He cracks me up.


Kaylee the vampire and Erin the zombie!! While they were waiting I'd asked what they wanted to be and they'd said unicorns or butterflies...hmm. Quite a change of mind!


Our happy little Ella-phant!!

Sweet big brother

Once a month right after church there is a program (KidStuf) for the elementary kids, so we were taking Kaylee (and Andy) to that today. So after church we picked up Andy from his room then peeked into Ella's room where she was sleeping, so we left her to nap while we took the others to KidStuf and we would pick her up afterwards. As we walked out of the kids' area with Andy, he looked up at me with a worried look and asked, "so we go home with no Ella?" It was so sweet! I told him the plan and reassured him that we would get Ella before we went home.

This is the two in Ella's crib on Friday morning. Andy likes me to put him in so he can play with her some before I get her up. He does look completely put off in this photo, but he is put off by having his photo taken - he laughs and cuddles Ella until I try to take a photo of it, the little stinker!

Some Ella news

Jamie just got a call back from the ENT.

The diagnosis is that Ella does have tracheomalacia (the wall of the trachea is soft, instead of hard cartilage). It is an area 2cm in length that is about 3cm below her vocal cords that is collapsing when she breathes. The ENT said that he has diagnosed this before, but it is rare, so he does not treat it. He is going to do some research on who he should send us to (pediatric thoracic surgeon, or another ENT that specializes in airway issues). If it was only the noise, he would have suggested we just wait and see if she grows out of it, but given what happened during the sedation for the MRI, he thinks we should talk to someone more specialized to decide what (if anything) to do. He also recommends that we talk to this person before re-scheduling the MRI, although he did say since the soft area was so close to her vocal cords that when they intubate her for the general anesthesia, it should be safe and support her airway open.

He should be able to let us know by Monday who to go see. I'm also putting in a call with the pediatrician to go over this information. I want to let her know what is going on, and discuss if she feels the MRI is still the best way to proceed to rule out hydrocephalus/"water on the brain."

Thanks for continued prayers!

Ella's medical update

Unfortunately yesterday wasn't a very good day for Ella (or any of us, really). We took her in to a Children's Healthcare Center for her rescheduled MRI and she was fine in the morning, without any congestion like last time (they wouldn't even attempt to sedate her last time because she was too congested). The anesthesiologist checked over Ella and said she was good to go. The IV insertion went well - Ella was only upset they had to papoose/swaddle her to hold her still, but they got it in on the first try. We went into the MRI room and they gave her the sedation medicine. They only needed to give her a milder anesthetic just so she would sleep and be still. After she fell asleep her airway collapsed ("laryngospasm" apparently) and she wasn't breathing on her own, so they had to stop the meds and use the air mask with the big squeeze bag on it (a bag valve mask, I think) to force air into her off and on for 15-20 minutes until she came around. Both of us were in the room the whole time, and Ella was never in danger, but obviously they couldn't do the MRI since she couldn't breathe on her own for the 30 minutes it would take to get the images they needed.

After she woke up she was all drunk happy/giggly and took fluids fine (half a cup of juice and a bottle). We went home where she had a little bit to eat and took a nap in her room. She woke up around noon with a fever of 101.5, had a bottle and then threw up that and everything from earlier in the day. The remainder of the day was the same: she couldn't keep anything down and was very lethargic. She would only calm when being held and she just wanted to lay her head on your shoulder and sleep. Unfortunately that meant we got drenched every time she woke up and got sick. (Jamie got thrown up on at least 5 times, Julie once.) We're still not sure if it was a side effect of the sedation medicine (a nurse at Children's said nausea wasn't as common with this med), or a stomach bug. The fever isn't a side effect of the medicine, but a different nurse said if it was a stomach bug she would have "lower" stomach issues, which never happened.

She went to bed for the night (in a pack and play in our room) around 11 and slept until 8am. Thankfully today she is keeping everything down and acting happy. We have an appointment tomorrow for an airway fluoroscopy (basically a live/movie xray from our understanding) to figure out what is going on with her airway. Fortunately we already had that scheduled because of her "honking" noise she makes, and now it would seem the honking could be related to what happened when she was sedated. Another fortunate thing is that the fluoroscopy doesn't require sedation. They actually want her to cry during it, so they can see her airway movement.

The Children's center we were at reported what happened to her pediatrician, but it sounds like the pediatrician still wants us to get the MRI done instead of waiting to see what happens with her head size over time. After we get the results of the fluoroscopy, I think I want to talk to the pediatrician directly (instead of through the nurses), if for no other reason because I want to know the risks we are weighing against each other. At this point, it sounds like to get the MRI, Ella will have to be put under general anesthesia (which puts you under so much they have to put in breathing tubes anyway) - although who knows if that will change based on the fluoroscopy results. I'm not sure if they can counter the nausea if they know she is sensitive, but I doubt any of us want a repeat of yesterday afternoon.

A couple prayer requests would be that we can find out what is going on with Ella's throat/airway on Friday, and that everyone involved can make the best decisions for how to proceed with the MRI to check for hydrocephalus/"water on the brain," given everything that has happened so far. Thank you!

Here's the little patient in the waiting room, then getting blood pressure checked.

Ella came out of sedation very happy - apparently lots of kids cry and/or are angry about it, but she was just in a happy, drugged state as she woke up. Later at home, she spent much of the day sleeping while being held.

Bath time

Ella at 9 months

Ella's 9 month pediatrician visit was a couple days ago. She is 22lbs 2oz and 28.75" long. Her head measurement had been pretty consistent until this visit, when it jumped "off the charts." Since this can be indicative of some problems (or it could be nothing aside from a growth spurt), she'll be having an MRI next week. They will have to sedate her for that, so we're hoping she doesn't have any issues from the anesthesia (not expecting any, but you never know). After having Andy sedated for his surgery last year, we're probably a little less anxious about it, especially since this time it's just for an MRI.

She will also be seeing an ENT doctor about the "honking" noise she makes (not sure how to describe it other than she sounds like a goose at times). Just a week ago I had mentioned to Jamie how she must have finally outgrown it as I hadn't noticed it in about a week or two, then she started doing it again - a LOT - over the weekend and ever since. The pediatrician was a little concerned that she was still doing it and said it was probably best to have her checked by an ENT who can hopefully give us a better idea of why she makes that noise (she has been since she was born).

Aside from her big head and honking, though, she seems well. :) Not crawling yet, but she rolls and scoots around a lot, and has been pushing up on her arms more and more lately. She loves to eat and has yet to meet a food she doesn't like. She also loves "the itsy bitsy spider" (it's worked wonders to calm her down since she was about 5 months old!!) and she's started giving kisses - mostly this entails her leaning into you and making an "mmmmmm" noise (I guess we do that when we kiss her!).

Kinsey Family Farm

Ahh, fall has arrived! Yesterday I took Andy and Ella to the pumpkin farm we've gone to the past 5 years (since Kaylee was about 6 months old). We had fun looking at pumpkins, running around (pretty much just Andy) and eating lunch before heading home.

Kaylee's Kindergarten Yearbook Photo

5 teeth for Ella

In the past couple weeks, Ella has gone from 2 teeth to five, and she's working on #6.  Here are some photos of Ella and Kaylee from this afternoon; if you look close in a couple you can see all five teeth (bottom middle two, top middle two and one on her right side next to top middle).

2 littles

Andy and Ella being nice to each other a few weeks ago. So far, so good on that front, but Andy's going to have another thing coming once his sweet baby sister starts crawling and can get into his stuff!!

Andy's first haircut

Andy took a bath this morning and got his first haircut. He said he wanted to, then he said no, then we talked him back into it, but afterwards he was so excited to be a big boy with a big boy haircut. So overall I don't think it was too scarring an occasion for him. Maybe more so for us - it is definitely tougher trimming his hair than Kaylee's!



The last picture is Andy showing off his "I am done with photos!" face.