Wow, suddenly, it's August, just like that! We've been enjoying our summer together, our last one as a family of three! We took Ella on her first long car trip and beach vacation - we went to Ocracoke, North Carolina. She did fantastic in the car for all those hours, better than her pregnant mother! Ella loved the water and sand, she would get so excited when the waves came to shore - it was truly worth the trip just to see her expression when water would wash up over her toes and legs!
Ella has been making great strides with her gross motor skills. She has finally decided she can crawl in four point, she just doesn't necessarily prefer it (still likes her belly best). She is pulling to stand and will crawl up and over you like you were a jungle jim if you are sitting on the floor with her. It still brings a smile to my face to see her on her feet, and she's been doing it for two months. Walking in to get her in the morning or after nap and finding her standing in her crib will never get old! We are going to PT once a week now since she is doing so much more. At PT she walks on a special treadmill (yep, walks) and watches her video. Sometimes we have to bribe her with food to keep her walking so she'll get to her goal of 10 continuous minutes (we usually do 2, 10 minute sessions on the treadmill) - but teddy grahams make everything better!
We have been otherwise busy preparing for baby number 2. Grahm has the room painted, crib together, and closet emptied...now I just need to get busy. In the next few weeks I will be pulling out all those bins of newborn and 0-3 month clothes that we haven't seen in so long and at the time never thought we'd retire! We are taking a child birthing class, since we missed that the first time around. Learning all sorts of meditation, relaxation and breathing techniques we may not even need...baby Jones #2 is breech...if she doesn't turn soon, we will have another c-section! I think it's safe to say we have another stubborn girl on our hands! Due date is September 14, and scheduled c-section is September 20th; but if she stays breech, we may move up the c-section, we'll have to wait and see. Turn, baby turn!
Saturday, August 13, 2011
Thursday, May 26, 2011
ECLC Spring Activities
In April, Ella's school went swimming. Ella LOVES the water in general (bath time, etc), so I thought this would be a big hit...
Since she loves to splish and splash and I knew she'd be in the arms of one of her teachers, I opted to tag along but not get in the water; assuming she would be just fine without me. As most of you know, Ella has been known to be a sympathy crier from time to time. In the locker room while getting the kids changed into swim diapers and suits, about half the kids started to fuss and cry. Maybe it was the new surroundings, the echo of the locker room, etc; who knows, but all I know is Ella did her best to keep her composure...and then lost it. The bottom lip started to quiver, and then the flood gates opened. And they never closed until 5 minutes before we were due to leave! We walked out of the locker room and into the pool area, at this point Ella is cutting off circulation in my neck with her arms wrapped so tightly. We tried to play beside the pool with some water toys, sing some songs, but it seemed there was no calming her down. Since she was in her suit, I decided to hand her off to one of her teachers in the water, thinking maybe the water would distract her from the others crying and she'd start to enjoy herself...no, not so much! I felt helpless on the sidelines in my jeans and t-shirt, wishing I had at least tried to squeeze into my swimsuit!
So, the following week, I went out and bought myself a maternity bathing suit and went swimming with the class. We had a blast. Ella was having so much fun splashing and kicking, I was literally drenched! And fortunately, there weren't as many crying kids this time around, which I'm sure helped!
Each week at ECLC, they have art class. Ella has absolutely no sensory issues and typically comes home covered in paint, clay, flour; whatever happens to be the medium of choice that week. Throughout the year, some of the "best" art work for each child is collected and given to the parents. A few select pieces are chosen to hang at the annual ECLC art show for parents and general public to enjoy. The art show also hosts a silent auction to raise money for the school. We bid on and got two small canvas paintings that were created by Ella and her two fellow classmates, Natalie and Erin. The families go on a "hunt" around the school to locate the two pieces from their child, as all the art work is hanging proudly in the halls of the school, and both pieces are not hanging together. Ella is quite the artist, but she is still perfecting her touch, so fortunately they had a small picture of each child and their name beside the piece of art for easier identification :)
Since she loves to splish and splash and I knew she'd be in the arms of one of her teachers, I opted to tag along but not get in the water; assuming she would be just fine without me. As most of you know, Ella has been known to be a sympathy crier from time to time. In the locker room while getting the kids changed into swim diapers and suits, about half the kids started to fuss and cry. Maybe it was the new surroundings, the echo of the locker room, etc; who knows, but all I know is Ella did her best to keep her composure...and then lost it. The bottom lip started to quiver, and then the flood gates opened. And they never closed until 5 minutes before we were due to leave! We walked out of the locker room and into the pool area, at this point Ella is cutting off circulation in my neck with her arms wrapped so tightly. We tried to play beside the pool with some water toys, sing some songs, but it seemed there was no calming her down. Since she was in her suit, I decided to hand her off to one of her teachers in the water, thinking maybe the water would distract her from the others crying and she'd start to enjoy herself...no, not so much! I felt helpless on the sidelines in my jeans and t-shirt, wishing I had at least tried to squeeze into my swimsuit!
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| Ella finally starting to calm down. She had cried so much she was exhausted and nearly fell asleep in Kelly's arms. |
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| Ella started to enjoy herself five minutes before we had to leave! |
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| Ella and mom |
Each week at ECLC, they have art class. Ella has absolutely no sensory issues and typically comes home covered in paint, clay, flour; whatever happens to be the medium of choice that week. Throughout the year, some of the "best" art work for each child is collected and given to the parents. A few select pieces are chosen to hang at the annual ECLC art show for parents and general public to enjoy. The art show also hosts a silent auction to raise money for the school. We bid on and got two small canvas paintings that were created by Ella and her two fellow classmates, Natalie and Erin. The families go on a "hunt" around the school to locate the two pieces from their child, as all the art work is hanging proudly in the halls of the school, and both pieces are not hanging together. Ella is quite the artist, but she is still perfecting her touch, so fortunately they had a small picture of each child and their name beside the piece of art for easier identification :)
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| Ella, mom and dad at ECLC art show |
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| Ella, mom and squinty dad at ECLC art show (sorry, best pic we got!) |
Friday, April 22, 2011
(the dreaded) Sleep Study
I know I've been promising a post about the sleep study, but wanted to wait until we had results back and knew what our next step was before posting. So, here goes...
Ella's "start time" was 7pm, so we arrived promptly and checked in, only to be told our sleep study technician was at the Westerville location and to please wait in the waiting area until his return. Germy waiting rooms are my favorite, especially at a Children's hospital. Fortunately, we brought the stroller, so we just kept Ella strapped in until he arrived.
The torturous process of gluing 15 probes to her scalp began about 7:30pm, and took nearly an hour. This involved initially drawing lines on her head with a wax pencil into the different quadrants that the probes were to then be attached, to act as a map once the application process started. The multi-step process for each probe involved: cleaning the scalp area with alcohol, applying a gel-like glue, setting the probe and applying pressure to get it to stick, covering the probe with a small piece of gauze drenched in yet another glue, and finally drying both adhesives with a small hair dryer of sorts. Sounds fun, right? And this was just what was attached to her scalp; she also had two electrodes on her chest, two electrodes on her legs, a snore pad sensor under her nose, a cannula in her nose, a CO2 detection tube in her mouth, and the familiar O2 sensor (ie "glow toe") attached to her toe. Oh, and I forgot the respiration bands around her chest and abdomen (purple belt-like things in some of the photos) and last but not least, the arm restraints to keep her from detaching any of the above. Needless to say, it took both Grahm and I, as well as the technician at times, to keep her restrained in order to get all of this on properly. It was extremely difficult to keep restraining her when she was screaming and crying so much, but I just kept telling myself nothing they are doing is actually causing her pain and if we don't get all this crap on correctly, we'll be here doing this again - which is of course not what I wanted.
Calming her down really just took some TLC from mom and dad, a good squeeze on Mr. Rabbit, and a nice bottle of milk. Ella was asleep by about 9:15pm, and was so exhausted she slept the whole night through. Grahm spent the night, and I went back in the morning to retrieve them. We were told by the technician that it was a "successful" study, in that they got all the info they needed and the study would not have to be repeated.
Ella's study came back with an index of 4, and anything greater than 2 is considered abnormal. The index is calculated by the length of time slept and number of "episodes". She was diagnosed (by the sleep study doctor) as having mild obstructive sleep apnea. Ella's pulminologist from when she was in the hospital (who originally ordered the test as part of our bargain to get discharged) told me they would at this point defer to her ENT, but that likely she would need to have her tonsils and adenoids removed. Hmm. I thought we had ruled out obstructive apnea when she was in the hospital by doing the scope and xray? After meeting with Ella's ENT, he explained that the scope and xray would only detect obvious obstructions (like a growth or abnormally large tonsils), but that you can still have obstructive apnea once you fall asleep and the soft tissue in your neck area relaxes and gives in to gravity, and your respiration's become shallower (normal during sleep). He said that her study was very mildly abnormal, and would have been considered normal 5 years ago, but that standards have changed, etc. He wants to only remove her adenoids, as that is a much less involved surgery for someone her age. Apparently, a tonsillectomy at this age usually results in a re-admittance for dehydration, as their little throats get so sore they won't drink or eat and they subsequently get dehydrated. Adenoid removal only should be out-patient, and we should hopefully be home by the afternoon, same day. Surgery is scheduled for June 16th. We figured since she was going to be under anesthesia, we would go ahead and have the tear duct procedure done too, why not? So, the coordination of two surgeons and a busy operating room resulted in us waiting until mid June, but it will be here before we know it! After a quick search on Wikipedia, I learned that adenoids aid our immune systems, but only until age 3, after which our immune systems have a more efficient ways of fighting off viruses and bacteria.
So, the results of the study are not exactly as I had hoped (of course I wanted them to be normal and for this ordeal to be over), but at least it is not central sleep apnea that would likely require O2 every night for sleep. We gladly called to have the O2 saturation monitor (that's been residing in her bedroom since her discharge in January) removed for good. No more glow toe!
A side note, the picture at the top of this blog is a year old this week! I guess maybe I should work on something a little more recent...or maybe my photographer husband should!
Ella's "start time" was 7pm, so we arrived promptly and checked in, only to be told our sleep study technician was at the Westerville location and to please wait in the waiting area until his return. Germy waiting rooms are my favorite, especially at a Children's hospital. Fortunately, we brought the stroller, so we just kept Ella strapped in until he arrived.
The torturous process of gluing 15 probes to her scalp began about 7:30pm, and took nearly an hour. This involved initially drawing lines on her head with a wax pencil into the different quadrants that the probes were to then be attached, to act as a map once the application process started. The multi-step process for each probe involved: cleaning the scalp area with alcohol, applying a gel-like glue, setting the probe and applying pressure to get it to stick, covering the probe with a small piece of gauze drenched in yet another glue, and finally drying both adhesives with a small hair dryer of sorts. Sounds fun, right? And this was just what was attached to her scalp; she also had two electrodes on her chest, two electrodes on her legs, a snore pad sensor under her nose, a cannula in her nose, a CO2 detection tube in her mouth, and the familiar O2 sensor (ie "glow toe") attached to her toe. Oh, and I forgot the respiration bands around her chest and abdomen (purple belt-like things in some of the photos) and last but not least, the arm restraints to keep her from detaching any of the above. Needless to say, it took both Grahm and I, as well as the technician at times, to keep her restrained in order to get all of this on properly. It was extremely difficult to keep restraining her when she was screaming and crying so much, but I just kept telling myself nothing they are doing is actually causing her pain and if we don't get all this crap on correctly, we'll be here doing this again - which is of course not what I wanted.
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Ella just after getting all hooked up. Homemade arm restraints that they called "welcome bands", as she was quick to tear out one of the probes just after we got everything on and in an effort to keep her from doing it again... |
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| Fake smiles by mom and Ella... |
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| They tape all the wires together in the back so she's less likely to get tangled in them during the night. How thoughtful of them! |
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| Dad and Ella in the morning, after what I'm sure was a very restful night for both! |
Calming her down really just took some TLC from mom and dad, a good squeeze on Mr. Rabbit, and a nice bottle of milk. Ella was asleep by about 9:15pm, and was so exhausted she slept the whole night through. Grahm spent the night, and I went back in the morning to retrieve them. We were told by the technician that it was a "successful" study, in that they got all the info they needed and the study would not have to be repeated.
Ella's study came back with an index of 4, and anything greater than 2 is considered abnormal. The index is calculated by the length of time slept and number of "episodes". She was diagnosed (by the sleep study doctor) as having mild obstructive sleep apnea. Ella's pulminologist from when she was in the hospital (who originally ordered the test as part of our bargain to get discharged) told me they would at this point defer to her ENT, but that likely she would need to have her tonsils and adenoids removed. Hmm. I thought we had ruled out obstructive apnea when she was in the hospital by doing the scope and xray? After meeting with Ella's ENT, he explained that the scope and xray would only detect obvious obstructions (like a growth or abnormally large tonsils), but that you can still have obstructive apnea once you fall asleep and the soft tissue in your neck area relaxes and gives in to gravity, and your respiration's become shallower (normal during sleep). He said that her study was very mildly abnormal, and would have been considered normal 5 years ago, but that standards have changed, etc. He wants to only remove her adenoids, as that is a much less involved surgery for someone her age. Apparently, a tonsillectomy at this age usually results in a re-admittance for dehydration, as their little throats get so sore they won't drink or eat and they subsequently get dehydrated. Adenoid removal only should be out-patient, and we should hopefully be home by the afternoon, same day. Surgery is scheduled for June 16th. We figured since she was going to be under anesthesia, we would go ahead and have the tear duct procedure done too, why not? So, the coordination of two surgeons and a busy operating room resulted in us waiting until mid June, but it will be here before we know it! After a quick search on Wikipedia, I learned that adenoids aid our immune systems, but only until age 3, after which our immune systems have a more efficient ways of fighting off viruses and bacteria.
So, the results of the study are not exactly as I had hoped (of course I wanted them to be normal and for this ordeal to be over), but at least it is not central sleep apnea that would likely require O2 every night for sleep. We gladly called to have the O2 saturation monitor (that's been residing in her bedroom since her discharge in January) removed for good. No more glow toe!
A side note, the picture at the top of this blog is a year old this week! I guess maybe I should work on something a little more recent...or maybe my photographer husband should!
Tuesday, April 19, 2011
Columbus Parent Magazine
I know we mentioned to several about the interview we did with Anietra Hamper for the April issue of Columbus Parent magazine, so I wanted to give the link to the article for all of you to read now that it is out in print and online:
http://www.columbusparent.com/live/content/issue/stories/2011/04/hot-special-marriages.html
Sleep study post soon to follow...
http://www.columbusparent.com/live/content/issue/stories/2011/04/hot-special-marriages.html
Sleep study post soon to follow...
Sunday, April 10, 2011
Simple Pleasures
Well, where has another month gone?! It's my favorite time of year, and like always, it's going by so fast. We've been keeping busy with our many appointments, and life in general. We have had the sleep study, glad to say that is over and done with; but I'm going to wait and post more detail and pictures once we have results back (should be this coming week). So, I just wanted to get a few recent pics up for all of you to enjoy!
A bit on milestones. I think, for the most part, the average person thinks of milestones for children to mean things like crawling, pulling to stand, standing, walking, etc. Don't get me wrong, those are certainly milestones, but there are many, many more small ones in between that don't get celebrated or recognized...unless you have a child that struggles to achieve them. In the world of physical therapy for a child with low muscle tone, there are so many steps in between all of those milestones I listed above. Ella had missed physical therapy for a month, so when her PT saw her again after a month, she was so impressed at what she was doing. She still army crawls like a pro, I swear faster than we walk, sometimes. She's very curious, wants to know what's going on, and certainly doesn't want to miss anything. She is getting really good at "pulling up", and this is a great strengthening exercise for her. I don't mean that she is pulling to stand, but the little step before that, in which little ones pull their upper bodies up and over things, like pillows and even someones legs (like mom and dad's). For Ella, it's ALL about motivation. If you put the right motivator (ie: food or favorite toy or something she's not supposed to have, like the TV remote) on the other side of your legs, she'll generally pull herself over you to get to it. That leads me to post these next few pictures. I think to the average parent, once your kiddo is tearing apart your kitchen cupboards, your thinking of child proofing and doing what you can to keep them out of there - because all they are doing is making another mess for you to clean up. Well, I'm ecstatic to say, "Ella is in the tupperware cabinet!", and I'll clean up her mess a thousand times, I don't care. To us, it's just such an accomplishment, a "milestone", if you will. Firstly, to have the gross motor ability to get there, then sit up, then open the cabinet and take out all it's contents; and secondly, to cognitively have the interest and curiosity. So, even though I don't own a single piece of tupperware (doesn't everyone still call it tupperware, even though it's not?!), I'm more than happy to keep this cabinet well stocked, without a safety lock, for her to rip apart as many times a day as she pleases. Not to worry, we will be adding safety locks to the other cabinets that we don't want her to get in to; but thankfully we have an old clintonville home with sticky cabinets that are really hard to get open!
That is all for now, more posts to come soon, promise!
A bit on milestones. I think, for the most part, the average person thinks of milestones for children to mean things like crawling, pulling to stand, standing, walking, etc. Don't get me wrong, those are certainly milestones, but there are many, many more small ones in between that don't get celebrated or recognized...unless you have a child that struggles to achieve them. In the world of physical therapy for a child with low muscle tone, there are so many steps in between all of those milestones I listed above. Ella had missed physical therapy for a month, so when her PT saw her again after a month, she was so impressed at what she was doing. She still army crawls like a pro, I swear faster than we walk, sometimes. She's very curious, wants to know what's going on, and certainly doesn't want to miss anything. She is getting really good at "pulling up", and this is a great strengthening exercise for her. I don't mean that she is pulling to stand, but the little step before that, in which little ones pull their upper bodies up and over things, like pillows and even someones legs (like mom and dad's). For Ella, it's ALL about motivation. If you put the right motivator (ie: food or favorite toy or something she's not supposed to have, like the TV remote) on the other side of your legs, she'll generally pull herself over you to get to it. That leads me to post these next few pictures. I think to the average parent, once your kiddo is tearing apart your kitchen cupboards, your thinking of child proofing and doing what you can to keep them out of there - because all they are doing is making another mess for you to clean up. Well, I'm ecstatic to say, "Ella is in the tupperware cabinet!", and I'll clean up her mess a thousand times, I don't care. To us, it's just such an accomplishment, a "milestone", if you will. Firstly, to have the gross motor ability to get there, then sit up, then open the cabinet and take out all it's contents; and secondly, to cognitively have the interest and curiosity. So, even though I don't own a single piece of tupperware (doesn't everyone still call it tupperware, even though it's not?!), I'm more than happy to keep this cabinet well stocked, without a safety lock, for her to rip apart as many times a day as she pleases. Not to worry, we will be adding safety locks to the other cabinets that we don't want her to get in to; but thankfully we have an old clintonville home with sticky cabinets that are really hard to get open!
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| The red bowls seem to be a favorite! |
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| Ella has taken to sitting at the front door, watching the world go by. Grahm says she's longing for her own puppy...do you think that's Ella's wish or daddys?! |
We got out and enjoyed one of those nice weekend days we had a few weeks back. Ella has been going to Highbanks since she was in utero, but we've never tried her in one of the baby swings. Quite honestly, I had always been afraid she wouldn't have the upper body strength to keep herself upright with the momentum, but she's gotten pretty strong in the last few months; and she did just fine. She absolutely loved it, laughing out loud and telling us "more" with just the octave of her laugh!
That is all for now, more posts to come soon, promise!
Thursday, March 10, 2011
Ella goes to COSI!
Ella gets to do some really fun, cool things at school. It usually involves big messes, like finger painting or self feeding that is evidenced by her clothes when we pick her up. Sometimes though, they take a field trip, and recently the whole class went to COSI! This was a Wednesday, Grahm's day, so dad went along as well. I know Grahm put an album on facebook, but I have to include a few of my favorite pics here!
We finally got the sleep study scheduled for Saturday, April 2nd - so one of us gets to have a really rockin Saturday night! I was disappointed that they couldn't get her in before then, I called at the end of Feb and they were scheduling 6 weeks out. They asked if we wanted to be on a cancellation list, and I said "Yes!" So far, we have gotten two calls to come last minute, literally an hour before she would need to be there! I realize cancellations happen most times day of, but an hour out?! Seriously. Think about this people. I have an 18 month old that will need dinner, overnight bags packed for both toddler and residing parent, and a 20 minute drive. Needless to say we haven't jumped on a cancellation yet. I'll let you know if that changes. Thanks for reading and feel free to comment, love to hear from all of you!
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| (Note the wardrobe change!) |
Sunday, February 20, 2011
Long Overdue Post
Thank you to those of you that follow this blog faithfully, and gently remind me that I haven't posted in a while...the reminders worked, so here I am finally getting an opportunity to download new pictures and write a new post!
The last few weeks since Ella has been home from the hospital have been fairly uneventful, and this is a good thing. Ella's appetite has returned with a vengeance, eating and drinking what seems like way too much to stuff into this little girl! Loss of appetite was expected with RSV, but fortunately Ella didn't lose weight. At her 18 month check up (which was postponed since she spent her 18 month birthday in the PICU), she weighed in at 18 pounds, 14.5 ounces; and measured 28.25 inches long. The next well visit would typically be at 24 months, but Ella's pediatrician would like to see her at 21 months, just to check in on her weight.
I wish I had more to report in regards to her follow up with Pulmonology, but I've literally been playing phone tag with the doctor all week. I did get a message saying her data looked good enough for her to come off the oxygen at night, but that she still sees a little "something" and would like to do a sleep study within the next month. I'm trying to clarify the "something" :) and will let you know what that means as soon as I know.
Ella is making great strides on a gross motor level. She is still doing her army crawl thing, but she has become extremely proficient at it, and moves at top speed. If I'm in the kitchen making dinner, she'll come check out what I'm doing; if I'm in the bathroom getting ready, she comes in to keep me company. She is "playing" with the all fours position, getting into it, rocking, but when she gets motivated to move, she's back down onto her belly and away she goes. She loves to watch the snow, so she'll go from the front door to the back slider doors, watching out the windows. Sometimes when I pick her up her shirt is dusty and I realize just how dirty my floors are. Grahm wants to tie a swiffer cloth to her chest and turn her loose!
We haven't snapped too many pictures lately, but below are a few from the past few days. Enjoy and thanks for reading!
The last few weeks since Ella has been home from the hospital have been fairly uneventful, and this is a good thing. Ella's appetite has returned with a vengeance, eating and drinking what seems like way too much to stuff into this little girl! Loss of appetite was expected with RSV, but fortunately Ella didn't lose weight. At her 18 month check up (which was postponed since she spent her 18 month birthday in the PICU), she weighed in at 18 pounds, 14.5 ounces; and measured 28.25 inches long. The next well visit would typically be at 24 months, but Ella's pediatrician would like to see her at 21 months, just to check in on her weight.
I wish I had more to report in regards to her follow up with Pulmonology, but I've literally been playing phone tag with the doctor all week. I did get a message saying her data looked good enough for her to come off the oxygen at night, but that she still sees a little "something" and would like to do a sleep study within the next month. I'm trying to clarify the "something" :) and will let you know what that means as soon as I know.
Ella is making great strides on a gross motor level. She is still doing her army crawl thing, but she has become extremely proficient at it, and moves at top speed. If I'm in the kitchen making dinner, she'll come check out what I'm doing; if I'm in the bathroom getting ready, she comes in to keep me company. She is "playing" with the all fours position, getting into it, rocking, but when she gets motivated to move, she's back down onto her belly and away she goes. She loves to watch the snow, so she'll go from the front door to the back slider doors, watching out the windows. Sometimes when I pick her up her shirt is dusty and I realize just how dirty my floors are. Grahm wants to tie a swiffer cloth to her chest and turn her loose!
We haven't snapped too many pictures lately, but below are a few from the past few days. Enjoy and thanks for reading!
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| Ella and her new Magna Doodle |
Thursday, February 3, 2011
Home Sweet Home
I can't believe it is Thursday and I am just getting to this post. Ella was discharged from the hospital Sunday around 3:30pm, and I don't feel like we've stopped since. Once we got her home, we had to call to have the Oxygen delivered and get our "operators license", then a quick grocery run for milk, and Monday morning I went back to work. But let me back up and tell you how our last few days at the hospital went and where we go from here.
On Friday, we saw an ENT who performed a scope to look for airway blockages that would cause obstructive sleep apnea and hence lower O2 levels during sleep. This test was normal. Next, we had an x-ray to check for extra soft tissue in the neck/throat area that could "relax" while Ella is asleep and also cause obstructive sleep apnea. This too was normal, although we really appreciated the excursion to radiology :) So, ENT and pulminology agreed to just watch her and see how she did Friday night. She slept really well (it's amazing how much better you sleep without someone coming in to do vitals every 4 hours), and only went below levels once. The next day, the doctors came by, happy to hear this news and decided we needed to stay one more night so they could hook up something to her saturation monitor that would give them a continuous feed of readings. Apparently the monitor normally just takes periodic reads rather than continuous monitoring. Ella didn't have as great of a night, but even when she went below levels, she only dropped to 86, much better than previous nights of dropping to 82 or 83. Finally, the doc reviewed the readings on Sunday morning and determined she fell within a range that would allow her to go home, but only with Oxygen during sleep. Whatever, I'll take it, just get us outta here!
So, the plan is to have her on Oxygen up to 4 weeks at home. This is the length of time the expect the virus to fully run it's course and for her to be completely healthy again. At which point we will do a sleep study. There still has to be a reason her stats drop during sleep and it could be one of two things. Either it's the virus still present in her lungs, weighing her lungs down when she sleeps and dropping her levels, or she has central sleep apnea. I vote for the first reason, but we'll just have to wait and see.
Oxygen at home has not been without incident. Ella is still very sensitive to being held down and having anything done with her body. This makes putting on the saturation monitor sensor (it attaches to her big toe) and the cannula a real treat each night. She sets off the alarm on average 2 times a night. It is almost always though because she has pulled the cannula out of her nose, or ground her toes into the mattress enough to mess up the sensor. Either way, Grahm and I are both bolting up out of bed at the sound of this horrendous alarm only to find our daughter sleeping peacefully right through it, thank God. The weather isn't helping. The night before last with the strong winds, our power flickered 4 times and each time it tripped her monitor, as the Oxygen machine needs electric to run. I almost wished the power would just go off for good, so at least we could hook her up to the tank that doesn't need electric and we can all get a good night's sleep.
We are so appreciative of our friends and family, and a big thanks to all of you that prayed, visited, called, emailed, texted, etc and kept us in your thoughts. We were constantly feeling good vibes, and it truly kept us going. I have included a few pictures from the last day or so at the hospital.
Susie
On Friday, we saw an ENT who performed a scope to look for airway blockages that would cause obstructive sleep apnea and hence lower O2 levels during sleep. This test was normal. Next, we had an x-ray to check for extra soft tissue in the neck/throat area that could "relax" while Ella is asleep and also cause obstructive sleep apnea. This too was normal, although we really appreciated the excursion to radiology :) So, ENT and pulminology agreed to just watch her and see how she did Friday night. She slept really well (it's amazing how much better you sleep without someone coming in to do vitals every 4 hours), and only went below levels once. The next day, the doctors came by, happy to hear this news and decided we needed to stay one more night so they could hook up something to her saturation monitor that would give them a continuous feed of readings. Apparently the monitor normally just takes periodic reads rather than continuous monitoring. Ella didn't have as great of a night, but even when she went below levels, she only dropped to 86, much better than previous nights of dropping to 82 or 83. Finally, the doc reviewed the readings on Sunday morning and determined she fell within a range that would allow her to go home, but only with Oxygen during sleep. Whatever, I'll take it, just get us outta here!
So, the plan is to have her on Oxygen up to 4 weeks at home. This is the length of time the expect the virus to fully run it's course and for her to be completely healthy again. At which point we will do a sleep study. There still has to be a reason her stats drop during sleep and it could be one of two things. Either it's the virus still present in her lungs, weighing her lungs down when she sleeps and dropping her levels, or she has central sleep apnea. I vote for the first reason, but we'll just have to wait and see.
Oxygen at home has not been without incident. Ella is still very sensitive to being held down and having anything done with her body. This makes putting on the saturation monitor sensor (it attaches to her big toe) and the cannula a real treat each night. She sets off the alarm on average 2 times a night. It is almost always though because she has pulled the cannula out of her nose, or ground her toes into the mattress enough to mess up the sensor. Either way, Grahm and I are both bolting up out of bed at the sound of this horrendous alarm only to find our daughter sleeping peacefully right through it, thank God. The weather isn't helping. The night before last with the strong winds, our power flickered 4 times and each time it tripped her monitor, as the Oxygen machine needs electric to run. I almost wished the power would just go off for good, so at least we could hook her up to the tank that doesn't need electric and we can all get a good night's sleep.
We are so appreciative of our friends and family, and a big thanks to all of you that prayed, visited, called, emailed, texted, etc and kept us in your thoughts. We were constantly feeling good vibes, and it truly kept us going. I have included a few pictures from the last day or so at the hospital.
Susie
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Ella, free and clear of facial band aids and nasal cannula. Now if they could just get those discharge papers completed...    |
Friday, January 28, 2011
What day is it??
I think it is Friday, and if so, we've been here a full week. It's hard to be too upset when I look at my happy healthy girl, but this situation is frustrating to say the least. For three days/nights now, Ella has been keeping her stats up during her wakeful hours, but drops her O2 when she is asleep (for nap and at night) to a level they are not comfortable sending us home with. We've been in this holding pattern for three days now, and just today they've decided to be "proactive" and see if perhaps there is some other reason than the virus for her stats to drop. We just had a pulminologist here, and she thinks Ella looks and sounds great and perhaps the reason for the drop is either anatomical or sleep apnea. So, next ENT will be coming to do a scope (to check for any anatomical issues), and depending on what they find, the next step might be a sleep study.
So rather than retype all I've written above, I'll just start a new paragraph, as we just had the scope done. Everything looks normal, so on to the sleep study; at least that's my assumption. Boy, wouldn't it be fantastic to have the sleep study tonight?! How do I make that happen...My fear is that if we don't get something done today/tonight, it won't happen until Monday. I might lose my mind by then.
Well, looks like at least one more night at Hotel Nationwide. This place is no where near worth ten grand a night.
Don't want to leave you hanging, so I've attached a few more pics. It is wonderful that Ella is so happy and smiling all the time. If she were miserable too, I think that might just put Grahm and I over the edge.
So rather than retype all I've written above, I'll just start a new paragraph, as we just had the scope done. Everything looks normal, so on to the sleep study; at least that's my assumption. Boy, wouldn't it be fantastic to have the sleep study tonight?! How do I make that happen...My fear is that if we don't get something done today/tonight, it won't happen until Monday. I might lose my mind by then.
Well, looks like at least one more night at Hotel Nationwide. This place is no where near worth ten grand a night.
Don't want to leave you hanging, so I've attached a few more pics. It is wonderful that Ella is so happy and smiling all the time. If she were miserable too, I think that might just put Grahm and I over the edge.
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Do you like my thousand dollar nightgown?? My butt hangs out the back :( |
Wednesday, January 26, 2011
Just another Friday?
Well I hope anyone reading this blog is not just finding out that Ella has been in the hospital since last Friday. But since I feel like I've only given pieces and parts of the story, I figured this is a good place to document the whole event, so here goes!
Ella had "cold symptoms" most of last week, runny nose, cough, etc. On Thursday when I picked her up from school, she was running a low grade fever, 100.5. She fell asleep on the way home, I carried her to bed where she slept some more and woke up her happy, chipper self. She was smiling, playing, etc just as she always does. In fact, she had crawled (army style) all the way from the living room to the front door to see the snow coming down. She was fussy for dinner, but drank plenty, so I just figured she didn't feel like eating. Friday we couldn't send her to daycare even though the fever was gone, so Grahm stayed home with her until noon, then grandma came to take over. She was a little fussy for nap, but otherwise an uneventful morning and afternoon. I got home around 4pm to relieve grandma, and she was asleep. I transferred her to bed to let her rest some more. When I checked on her an hour later, I could tell she had a fever and her breathing was short and shallow. I called the on call doc right away, and she said the breathing was due to the low grade fever (so long as it stayed under 40 reps per minute). I got her up around 6pm to at least get some fluids in her, of which she happily obliged, then back to sleep. I then checked her around 7:30pm, and I could tell her fever had spiked and her breathing had gotten worse. I again called the doc, who agreed I should take her to the Urgent care so I didn't end up in the ER later (little did we both know).
Children's Urgent care in Westerville took us right back (dad met us there, so at least I'm not alone at this point, thank God). They tested her oxygen saturation and found it to be 79. 79...I remember from the NICU days that that number should be as close to 100 as possible. Another, more accurate oxygen saturation test was done, and 79 was still the answer. Long story short, you cannot self transport your child if the situation is critical. It took me a minute to register what "cannot self transport" really meant - we were going to take an ambulance ride. 911 was called, and we were speeding down 71 within 10 minutes. Dad was trying his hardest to keep up (there was no way I could drive a vehicle at this point and no way I was not getting in that ambulance with my daughter), but was cut off by a dump truck and delayed just a bit. Note to all, I've never really thought about it, but when you pull over to the side of the road to let an ambulance pass, wait a few extra seconds for the frantic family member following close behind to get by you as well! A "team" was awaiting our arrival at the ER. Surprisingly, I kept it together until this point. At this moment, Ella is on a table with no less than 8 people over top of her, doing all sorts of things and working frantically. I could only stand alone off to the side and count the minutes until Grahm arrived. What seemed like an hour was really only 10 minutes, and then dad was there. 4 hours later, we get admitted to the PICU with a diagnosis of RSV and Pneumonia. Ella needed to be in the PICU because she was getting assistance with breathing. We spent 3 (very restless) nights in the PICU, and upgraded to a regular room early Monday morning. She left the PICU on a nasal cannula, which we have been working to wean her from. She needs to breathe room air for 24 hours and keep her stats up before she can go home. We started the room air at 4pm yesterday, but had to have some oxygen at 11am today. I'm not sure what this means for our discharge, but I have a feeling we might be spending another night here. This room is not the four seasons, but it certainly feels like it after the PICU. Now if we could only get those nurses to stop coming in so often in the night, maybe we could all get more than 4 hours of sleep. At this point, I'm certain Ella would recover quicker at home given her own bed and piece and quiet; but doctors know best and our PICU doctor told Ella that "slow and steady wins the race". I think this is about as slow and steady as I can take though.
Thank you thank you to all of the well wishes, prayers and good vibes. I hope the next time I post it will be letting you all know we are home.
A few pictures of our last few days to share:
Ella had "cold symptoms" most of last week, runny nose, cough, etc. On Thursday when I picked her up from school, she was running a low grade fever, 100.5. She fell asleep on the way home, I carried her to bed where she slept some more and woke up her happy, chipper self. She was smiling, playing, etc just as she always does. In fact, she had crawled (army style) all the way from the living room to the front door to see the snow coming down. She was fussy for dinner, but drank plenty, so I just figured she didn't feel like eating. Friday we couldn't send her to daycare even though the fever was gone, so Grahm stayed home with her until noon, then grandma came to take over. She was a little fussy for nap, but otherwise an uneventful morning and afternoon. I got home around 4pm to relieve grandma, and she was asleep. I transferred her to bed to let her rest some more. When I checked on her an hour later, I could tell she had a fever and her breathing was short and shallow. I called the on call doc right away, and she said the breathing was due to the low grade fever (so long as it stayed under 40 reps per minute). I got her up around 6pm to at least get some fluids in her, of which she happily obliged, then back to sleep. I then checked her around 7:30pm, and I could tell her fever had spiked and her breathing had gotten worse. I again called the doc, who agreed I should take her to the Urgent care so I didn't end up in the ER later (little did we both know).
Children's Urgent care in Westerville took us right back (dad met us there, so at least I'm not alone at this point, thank God). They tested her oxygen saturation and found it to be 79. 79...I remember from the NICU days that that number should be as close to 100 as possible. Another, more accurate oxygen saturation test was done, and 79 was still the answer. Long story short, you cannot self transport your child if the situation is critical. It took me a minute to register what "cannot self transport" really meant - we were going to take an ambulance ride. 911 was called, and we were speeding down 71 within 10 minutes. Dad was trying his hardest to keep up (there was no way I could drive a vehicle at this point and no way I was not getting in that ambulance with my daughter), but was cut off by a dump truck and delayed just a bit. Note to all, I've never really thought about it, but when you pull over to the side of the road to let an ambulance pass, wait a few extra seconds for the frantic family member following close behind to get by you as well! A "team" was awaiting our arrival at the ER. Surprisingly, I kept it together until this point. At this moment, Ella is on a table with no less than 8 people over top of her, doing all sorts of things and working frantically. I could only stand alone off to the side and count the minutes until Grahm arrived. What seemed like an hour was really only 10 minutes, and then dad was there. 4 hours later, we get admitted to the PICU with a diagnosis of RSV and Pneumonia. Ella needed to be in the PICU because she was getting assistance with breathing. We spent 3 (very restless) nights in the PICU, and upgraded to a regular room early Monday morning. She left the PICU on a nasal cannula, which we have been working to wean her from. She needs to breathe room air for 24 hours and keep her stats up before she can go home. We started the room air at 4pm yesterday, but had to have some oxygen at 11am today. I'm not sure what this means for our discharge, but I have a feeling we might be spending another night here. This room is not the four seasons, but it certainly feels like it after the PICU. Now if we could only get those nurses to stop coming in so often in the night, maybe we could all get more than 4 hours of sleep. At this point, I'm certain Ella would recover quicker at home given her own bed and piece and quiet; but doctors know best and our PICU doctor told Ella that "slow and steady wins the race". I think this is about as slow and steady as I can take though.
Thank you thank you to all of the well wishes, prayers and good vibes. I hope the next time I post it will be letting you all know we are home.
A few pictures of our last few days to share:
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PICU stay. Thankfully Mr Rabbit was there. Ella's glow toe  I get all the pudding I want!  I use this thing as a weapon  Ella turning on the cute. She was a staff favorite. Hard to believe, right?  Dad set up the laptop so they could have movie day.  Not a big fan of hospital food. Neither are mom and dad.  Thank you for all the get well cards and wishes. Love-Ella |
Sunday, January 16, 2011
Snakes, Lizards and Turtles, Oh My!
Ella's school was visited this week by Peter, the reptile man. He brought lots of slithery, scaly things in for the kids to see and touch. Ella wasn't a big fan, in fact, I pretty much had to force her hand in "petting" the blue tongue skink. The turtle was a no go for her completely, and the poor lizard who lost his tail was way to fast for Ella to catch.
An "Ella update" of sorts, we had a hearing test on Thursday at Children's. The first test consisted of a probe inserted into each ear in which the movement of the eardrum is measured. If the eardrum has measurable movement, it is said to be functioning properly and likely does not have any fluid behind it. Unfortunately, they do one side at a time (why??). She did well for the left, was fascinated by the doctor blowing bubbles in her face; but when it came time for the right side, there was no having that probe in her ear! The doctor ran out of bubbles and Ella wanted nothing more than to remove that annoying probe from her right ear. And she did, over and over and over again until finally we all gave up. She won. Next they did a sound booth test in which they can assess the overall hearing. This test was smooth sailing, as she was easily entertained with the puppets popping up and making noise on her left and right sides. She passed with flying colors, which means they were able to determine she has adequate overall hearing, but could not access each side individually. Guess we'll try that probe thing another time...
An "Ella update" of sorts, we had a hearing test on Thursday at Children's. The first test consisted of a probe inserted into each ear in which the movement of the eardrum is measured. If the eardrum has measurable movement, it is said to be functioning properly and likely does not have any fluid behind it. Unfortunately, they do one side at a time (why??). She did well for the left, was fascinated by the doctor blowing bubbles in her face; but when it came time for the right side, there was no having that probe in her ear! The doctor ran out of bubbles and Ella wanted nothing more than to remove that annoying probe from her right ear. And she did, over and over and over again until finally we all gave up. She won. Next they did a sound booth test in which they can assess the overall hearing. This test was smooth sailing, as she was easily entertained with the puppets popping up and making noise on her left and right sides. She passed with flying colors, which means they were able to determine she has adequate overall hearing, but could not access each side individually. Guess we'll try that probe thing another time...
Sunday, January 9, 2011
Christmas 2010
Santa was very good to us this year. He brought Ella lots of fun toys and cool outfits, but mostly she was digging the tissue and wrapping paper!
We had a beautiful Christmas tree this year, courtesy of Country Pines Tree Farm:
We hope your holidays were merry and we wish you love, health and happiness in 2011.
Ella was a big fan of the tree ornaments, the ones she could reach, anyway~
We had a beautiful Christmas tree this year, courtesy of Country Pines Tree Farm:
And by the end of it all, Ella succumbed to sheer exhaustion!
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| it's hard to see, but her head is resting on a copy of National Lampoon's Christmas vacation! |
Thursday, January 6, 2011
Getting started
Hello Everyone!
I know it's been a while since I've sent out an Ella update. My intention was to get this blog going months ago, but like most everything else on my to-do list, I accomplished it much later than I had planned. Better late than never, right?
My hopes with this blog is that it will serve as a place for me to share some thoughts, update everyone on Ella's progress and keep those that are interested up on the general happenings at the Joneses. I plan to not always focus on Down syndrome, but of course it will be a big part of our story. Perhaps this blog will help other Ds parents along the way as other blogs have helped me.
I have set up an email specifically for this blog at ellagrowstrong@gmail.com. There is always the option to post comments to each post, and those comments will be available for anyone to read - but feel free to use the email if that is your preference. I haven't worked with the blog template enough yet to figure out how to add all the fancy stuff, but I'll get there. The point initially is just to get some posts up. Feel free to share this web address with anyone you wish, Ella would love more attention (she's currently deprived in this area...) The best thing for me about sending out my monthly Ella updates was the feedback and comments I got from all of you. Please keep them coming!
Here we go...
I know it's been a while since I've sent out an Ella update. My intention was to get this blog going months ago, but like most everything else on my to-do list, I accomplished it much later than I had planned. Better late than never, right?
My hopes with this blog is that it will serve as a place for me to share some thoughts, update everyone on Ella's progress and keep those that are interested up on the general happenings at the Joneses. I plan to not always focus on Down syndrome, but of course it will be a big part of our story. Perhaps this blog will help other Ds parents along the way as other blogs have helped me.
I have set up an email specifically for this blog at ellagrowstrong@gmail.com. There is always the option to post comments to each post, and those comments will be available for anyone to read - but feel free to use the email if that is your preference. I haven't worked with the blog template enough yet to figure out how to add all the fancy stuff, but I'll get there. The point initially is just to get some posts up. Feel free to share this web address with anyone you wish, Ella would love more attention (she's currently deprived in this area...) The best thing for me about sending out my monthly Ella updates was the feedback and comments I got from all of you. Please keep them coming!
Here we go...
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