The Jelly Chronicles Blog
1 year ago
We had ourselves a Merry little Christmas!
We also enjoyed these little gems - my first foray in to 'from scratch" Red Velvet cupcakes. Boy were they yummy!
Christmas was really magical this year. This was the first year that Nate really "got" the whole Santa thing. Just before 7 am, he sprung from his bed and wanted to go downstairs to see if Santa came. It was so nice to have both kids here, happy and healthy.
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| Laying under the Christmas tree before we unwrapped presents. |
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| Finley thought the best thing was the paper! |
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| Nate proudly showing off his Scooby Doo game! |
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| Still playing with the paper! |
We invited my mom and step dad over for brunch Christmas morning - a first for us. I got almost everything ready the night before - egg bake was ready in the fridge and just had to be put in the oven. Biscuits baked while the kids were opening gifts. So after the kids opened presents, I decided to slice some potatoes to roast in the oven - with the mandolin I've had for years and never used (because frankly it made me nervous). Suffice it to say, it made me nervous for a reason (nevermind the fact that I neglected to use the guard) - here was my special Christmas gift:
Five stitches in the index finger on my right hand! It happened very quickly and I immediately knew that I would probably need stitches. I tried to get Mike to confirm that for me but he refused to look at it. The police officer in the ER asked me why on Earth I was messing around with such a thing so early in the morning! I got to the ER about a quarter to 8 and was home by 9 and the aforementioned egg bake was nearly done (courtesy of Mike's ability to heat up the oven) and we still got to enjoy brunch with my mom and Jerry!
Christmas evening was spent at my Mother-in-Law's where we joined them for dinner. It was so nice to see Mike's sister Andrea and her husband David and their little guy - also named David. Nate just adored little David and played so good with him - he was sharing his "favorite" toys and telling us how cute he is. To be fair - he is REALLY cute....
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| Two babies tuckered out after having lots of fun! |
While it seems like a million years ago now, Finley's tests went off without a hitch last week. She was admitted Monday afternoon and they took her down for her tests at 7:30am on Tuesday. She put on quite a show in the OR waiting room - entertaining all of the doctors and other patients down there. The morning is a REALLY good time for Finley - she is always full of energy - arms and feet moving a mile a minute - singing songs, etc. She had everyone laughing.
I had asked the anesthesiologist to try to avoid intubating her if possible because I wanted to try to avoid irritating her airway. He was able to do some sort of mask thing over her throat and thus avoiding the need to intubate - which was awesome. Her bronchoscopy went well - Dr. Holinger said her airway looked the same or maybe just slightly better than the last bronch she had in May. He was very surprised that still with only 25% of capacity of her airway that she hasn't had any respiratory problems. Since she hasn't though - there is no need for surgery or anything at this point - thank God. He did say that her airway is still very irritated from her reflux and he advised us to go see a gastroenterologist with the hopes that perhaps he would have a better strategy for treating her reflux.
Dr. Yoon, the ophthalmologist, was able to get in to the OR to do the refraction of Finley's eyes. He took some pictures of her colobomas and gave me a copy and we learned that Finley needs glasses! He is mailing her prescription and we will be going to pick out her new glasses soon! She is going to look so cute with glasses!
Finally, the bad news of the day was that Finley's hearing has gotten worse in both ears. Her right ear had previously only been a mild loss and it still fell within the range of being able to still hear "normal" speech sounds which is why they weren't sure that ear needed to be aided originally. Bow she falls 20-30 decibels below that normal range. With hearing aids, doctors believe that hearing can be increased 30-40 db - so theoretically Finley's hearing in the right ear, once her hearing aids are adjusted, she be pretty much back in the normal range. The left ear on the other hand also got worse - but unfortunately is now more toward the profound loss level and so even with her hearing aids, she likely won't be able to hear any of the normal speech sounds. This generated alot of discussion last week with Finley's speech therapist and has us doing some additional follow up to see if Finley might qualify for a cochlear implant in her let ear. While we did know that Finley's hearing could get progressively worse (due to a combo of things - the antibiotics she was on with her infections, her CHARGE Syndrome, and because of her heart surgery) we were holding out hope that it wouldn't. Hope is by no means lost though - especially as long as we can pursue potential options with a cochlear implant.
Our stay at the hospital last week did end with another bright spot as I was able to do something I have been wanting to do for a long time. Anyone who is familiar with the Fullerton exit off the Kennedy knows that there are always homeless people at the bottom of the exit - coming from both sides of the expressway. I normally always see the same homeless people there too - like they have dibs on a certain corner. When we went to the eye doctor the week before last, I saw someone new. It was a woman who was all bundled up, holding a sign that said "Homeless Family - Lost Everything - Need Help". So that weekend I put together a care package with a bunch of necessities - socks, hat, gloves, rain poncho, toothbrush/toothpaste, food, etc. etc - and a Christmas card and I planned to give it to the first homeless person I saw - secretly hoping I would see this woman again. But when I got off the expressway that Monday - I saw no one. Not a single one of the familiar faces I had come to recognize after all of our trips down Fullerton. So I kept the bag in my car and as I headed toward the expressway on Tuesday, on our way home, I again saw no one. I was a little bummed out but I figured I would take my care package home and donate it to a local shelter - still achieving the purpose I set out with. But just was I was about to get on the expressway - I saw that homeless woman! She was working the opposite side of the street by the other exit. So I swung a quick u-turn, put on my hazards and pulled up. Then I called her over to the car and hoisted my giant bag of goodies out the window and wished her a Merry Christmas. The smile on her face made my day. And it felt far better than I ever could have imagined!
As I close this super long post, one final note of significance. Our NICU nurse Joyce and her husband Adam welcomed their first child this weekend - on Christmas morning! Thomas Joseph was born at 7:41 am on Christmas and weighed 9 lbs and 1 oz. Congratulations to Joyce and Adam on your special Christmas gift!
My Christmas Wish
I just got done telling my mom last week that of ALL of the vacation time I had this year (which included two extra weeks for my 10 year "splash") all of it - ALL of it - has been used for medical things - surgery, hospitalizations, doctor's appointments. You name it. So I was really looking forward to my Christmas vacation which was to start yesterday and go through the end of the year. Only one doctor's appointment for Finley, she is happy and healthy. Good times. Then I got a call from Dr. Holinger's surgery coordinator (Ben)- we have been trying to reschedule Finley's bronchoscopy and ABR that she couldn't have at the beginning of November because she was sick. Well, I made it my mission this week to ride this guy like a rented mule so that we could at least get it on the calendar. And I went so far as to say, "if we could try to get it in by the end of the year that would be GREAT since I've already met my Out-of-Pocket maximum for the year." Of course when it came out of my mouth - I was thinking - "the week after Christmas would be ideal!". You know what they say - be careful what you wish for! Anyway, I got a call early yesterday afternoon from Ben and he had "great news" for me. Dr. Holinger and the audiologist were going to flex their schedules for us and they could do the procedures on Tuesday. As in next Tuesday. The 21st. She'd get admitted on Monday afternoon, get up on her IV fluids and then have the procedures on Tuesday with the expectation that she will go home Tuesday night. Piece of cake right? Well the pessimist realist in me makes me fear that it won't be as simple as that. For those of you that don't remember, the last time Finley got a bronchoscopy, she wound up in the hospital for two weeks because they found a nasty infection in her airway. Anyway - we HAVE to have these tests done. Otherwise we have to wait until late February and that is just too long to drag this on - we began trying to schedule in August! All of that being said, my Christmas wish is to make sure Finley makes it home before Christmas. And while part of me is trying to tell myself to suck it up - if something happens its just ONE Christmas of many we will have - but its Christmas. And I have so been looking forward to being at home, as a healthy family this year. So hopefully the big man in the red suit can manage this. Seems pretty easy right?
Since we will now be at the hospital all day Monday and Tuesday, my plans to finish my Christmas shopping and wrap gifts at the early part of last week have had a wrench thrown in to them. So I will be out and about trying to get all of this done over the weekend. With the thousands of other people. UGH. Wish me luck.
Finley got her two front teeth for Christmas!! Perhaps its was her use of the remote as "the best teething toy on Earth" but one of them popped through a week ago Thursday and the other popped through last Sunday. As if that weren't enough for our girl, we are also waiting on her eye teeth to break through now. Both of them. Finley just doesn't do anything half-assed (as reference above : o ).
Mike spent the week in Costa Rica this week for work. Life's a bitch right? Somehow it just isn't fair that when I travel I go to exotic places like Cincinnati, OH and Richmond, VA - he goes to Costa Rica, Argentina, Australia and Ireland. Hmmmm. And he goes for a week at a time which means that yours truly has overnight feed duty for Finley all to myself. I have to say though, Nate was wonderful and very well behaved while Mike was gone (except for one teeny little hiccup) and Finley was great as well. Unfortunately it was a busy week for me. Tuesday I participated in a volunteer event that I had organized at Erie Family Health Center in Chicago. You might remember a few weeks back I posted a picture from the toy drive we had for Erie. On Tuesday we went to the west town facility and painted the new child care center. It was a lot of fun. Their CEO, Dr. Lee Francis is a WONDERFUL man - he brought us on a great tour of the facility and told us all about all of the wonderful services that they provide to the community. Its an amazing place and they do great work. I am so happy we've been able to partner with them on so many great opportunities.
Wednesday, Gigi and I took Finley to pick up her orthotics. They are Ankle & Foot Orthotics (or AFOs) and she will wear them during therapy to help her practice standing. They turned out really cute - I got to pick out the strap colors, the pattern on the plastic, etc so hers have hearts all over them and have lavender colored straps with little sneaker bottoms on them for traction!
Yesterday I took Finley to Children's for an ophthalmology appointment. Dr. Yoon (who I adore) said that her eyes hadn't changed at all since the last visit in March (which is great). He took a lot of time to help me understand exactly what a coloboma is and why its not correctable. Using a model of the eye, he told me to imagine that the entire inside of our eye is lined with a delicate film - that is our retina. A coloboma is caused from the eye not completing in utero - so there is a big hole in Finley's retinas. The coloboma in her left eye sits right on her fovia which is the spot directly over the optic nerve. This interferes with the signaling to the brain - so what Finley sees through her left eye, doesn't get processed correctly because the connection to the optic nerve is blocked. He said that her left eye will likely not ever improve. He believes she does have some very limited vision in that eye - like peripherally - but that she likely only sees shadows and such. The right eye is better, "but not great" in his words. The coloboma in the right eye does not completely take out the optic nerve - but it does sit on the macula. And for those of you who aren't eye experts - the fovia and the macula are two of the most important structures in your eye as they contain all of the rod and cone cells which are responsible for determining vision. So again, not good that the coloboma takes out a chunk of those "vision" cells in her right eye - but "good" that the fovia isn't directly involved because the optic nerve in that eye is not blocked. At this time, we are trying to determine if Finley's vision can be enhanced through glasses but its been tough for him to do a refraction on her at her visits because of where the colobomas sit and because she is, quite frankly, squirmy. So he is going to try to take advantage of the fact that she will be in the OR on Tuesday, under sedation, and he is going to try to do the refraction then. He said he doesn't "think" Finley needs glasses right now - but wants to be sure so that we can maximize her vision if that is the case. Also, he said that regardless, we would likely put glasses on Finley down the road to help protect her right eye - since that is the only one she will be able to use. I am still not convinced that Finley isn't going to surprise us as far as her vision is concerned. Her actions seem to indicate that she does see pretty decently in that right eye. We will not lose hope. That is for sure!
I am going to wind this down so I can go out for a run. Seems crazy I know but its actually not that bad to run in this weather - especially once you get going. The worst thing I think is worrying about falling since tons of people don't shovel their sidewalks! SHOVEL THOSE SIDEWALKS PEOPLE!! There are people like me who are just crazy enough to run outside in this weather. I also need to go hide Innie, our Elf on the Shelf, because I hear Nate stirring upstairs. God I love Innie, Nate has so much fun with the whole "Elf on the Shelf" concept. But darn it if I am not running out of hiding places. And Nate has even gone so far as to tell me that some of Innie's hiding spots are "lame". Hahaha.
Have a great weekend!
The "Where the hell have you been" post.
I think this might be the longest stretch I have gone without updating my blog since I started it. I hope that that handful of people that read this haven't give up on me! Work has been keeping me far busier than normal (I am sitting in a hotel room in Cincinnati as I type this). Fortunately, after working all of last weekend straight through - I've had a couple of good client meetings this week and that has made it well worth it. And let me just say that the client I am visiting in Cincinnati, Cintas - is THE GREATEST CLIENT EVER. Being here is not like work because they really are the best client in the world to work for. And if you think perhaps my client reads this blog and I am just trying to butter them up - You are wrong! I really do feel that lucky. Besides, while I would love to this that that many people are actually interested in what I have to say here, I am not quite THAT delusional. Although I do have my days....
Finley is teething hardcore. Her favorite teething relief at the moment is the remote control - and this has led to some pretty funny incidents between her and her daddy (who also loves the remote control). The funny thing about Finley is that as chill of a kid that she is - she DOES NOT like having the things she wants taken away from her and as such, I have witnessed some tense moments between the two of them. Anyway, the poor girl is getting THREE of her front teeth at once and I am not sure, but I think there might be more coming too. Currently, at 16 months (in fact today is her 16 month birthday - Happy Birthday Princess!) she still only has the two teeth she got at ages 9 and 10 mos. Nate got his first tooth at 14 months, and then, his came in at least two at a time from there but he didn't finish getting all of his teeth (like his molars) until he was three. And so, since Finley never does anything half-ass - teething is no different. She has been a champ as always - but darn it I just wish those teeth would break through enough to give her some relief. Currently, she just has these teeny tiny pinpoint dots where the skin has broken. And so the battle of the remote shall continue.
And now for some Thanksgiving pics of the fam. How cute are these two. Nate and his cousin Kassi breaking a little Thanksgiving bread at the kiddie table (note all of the Buzz Light Year toys that joined them for the feast).
Tammy and Jim blessed us with their overwhelming fashion sense and presented us with "the dueling scarves".
Gabi, the cutie pie, who graduated to the adult table this year!
And last but certainly not least - Princess Finley in the adorable dress we got from who else? Amanda! I will have you guys know - this was the very first time Finley wore tights. As a mommy of a little girl, this was a big moment for me, a milestone. It was so exciting, and I am sure you are all thinking, seriously? But mind you, we didn't really get out much Finley's first year - the tights? They were a big deal for us! Isn't sure adorable?
And while I pledged I would never get another real tree....I present to you...my real Christmas tree! Here is the deal - after Thanksgiving, I IMMEDIATELY get this urge to get the tree up. This year, our tree is still in storage, not to mention all of lights on my lovely pre-lit tree - are burnt out. So if I was going to have to string lights on the damn tree anyway - I went the route that got me to the desired end result (having my tree up) the soonest. And so far I have to say - my experience this year has been a lot better. This year we chose a Noble Fir, last year we had a Frasier Fir - I like this one so much better. Its got a better shape, actually smells like a Christmas tree and the branches are tightly packed and I love that.
And along the lines of Christmas - I am happy to say that my mom and I braved Black Friday shopping this year - at of all places - Woodfielld Mall! Although my mom thought I was nuts - the best deal of the day was 50% off of EVERYTHING at Gap Kids. That's right, I waited in line for an hour and 15 minutes. My mom thought I was nuts! Would I do it again? Yep. I saved $77!! Go me!
The Roth family is full of the Christmas spirit. My Christmas shopping is nearly done - I have been making good progress on the since Black Friday.Nate is REALLY in to his Elf on the Shelf, Innie, and the first thing he does every day when he wakes up is go to find him. And when I ask him how Innie got to his hiding spot of the day - he tells me "He's magic mom!". I love it.
Remember the DIY Christmas ornament wreath I mentioned in one of my last posts? Probably not, since it was so long ago....Anyway, here it is....
And working in this other crazy contraption her vision therapist brought last week, and left at our house because Finley liked it so much, that gives her nice support in her midsection so she can simulate being on her hands and knees.
Other miscellaneous things...Finley had her first cardiology appointment today since they took her off the Propranolol. I assumed the doctor would do an echo and she didn't. Slightly disappointing because I was thinking that an echo would give me a little peace of mind as to how everything is going with her heart - so now - I still feel a little uncertain. Needless to say, I will be contacting her cardiologist when I get home!
And for my not-so -regular Weight Watchers update. I gave back two pounds after Thanksgiving, which I sort of figured was a given. The Sunday after Thanksgiving they launched their new Point Plus program and last week, my first week on the new program...I lost 4.6 lbs! I am up to 13 in total. But I fear this week might be a little rough too since I have been traveling all week. Oh well, the scale is my friend!
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