We spent the last couple of weeks getting the Christmas decorations out (yes we started before Thanksgiving, that’s the benefit of not hosting a Thanksgiving meal at your house).
Somebody is already a fan of the Christmas tree.
Bella of course has always enjoyed the Christmas lights.
I had been eyeing pottery barn’s Christmas tree advent calendar for a couple of years. I can’t remember it’s price but I wanted to say it was near $100. I decided I could make it, and two years ago I started. It’s probably worth it’s price tag if you wanted something in the same season, but luckily I still got it done in plenty of time to start a new tradition with our family. The first picture is from Pottery Barn (no longer available) the second one is my creation.
I still need to add numbers for the countdown (maybe that will get done in another year)!
Of course the pockets are so small, we really can’t fit much in them, so instead we will have to be creative.
Now that I have finished up this project, I found another one at pottery barn to copy that will take another couple of years. It’s a felt nativity scene and it’s going for $129. I think it’s adorable, except for the shepherd holding the lamb, his hair looks a little funny. But I think it would be great to have a nativity scene that the kids could actually play with.
Watching the Macy’s Thanksgiving Day Parade, which according to their looks and behaviors, isn’t too exciting yet.
Hoping all have a wonderful and delicious Holiday!!
We had the last of Bella’s big bunch of doctor’s appointments yesterday. The appointment went fairly well, this one was for her scoliosis. The curvature of her spine measured 30 degrees and looking at the x-rays we have, it looks pretty bad. But the doctor said she actually looks much better in person and at this point we don’t need to do anything medical. He also believed that in a child this young that shows scoliosis it usually means that they are genetically predisposed to getting scoliosis and that bracing often doesn’t work to correct the curve. This basically means if we get to the point where the curve is bad enough we need to correct it, then we are looking at surgery (metal plates attached to the spine) to fix it.
In the meantime there are plenty of things we need to do to help Bella, including having her really work on trunk stability (physical therapy), and making sure she is correctly supported when sitting in her chairs. The doctor mentioned that most kids will try and right themselves when their spine in curved, which then creates a curve in the other direction. Bella ALWAYS leans to the side. But I am fairly certain she isn’t trying to right her curved spine, she just prefers to lean that way. Just likes she prefers to hang upside down instead of right side up. And that is my frustration. We should be doing more with her, but if she doesn’t want to do it, we really can’t make her. If she refuses to hold her head up because she prefers to let it hang, then she isn’t going to be sitting upright unless we put a strap on her head. And for now I am refusing to do that.
I feel like I am in a losing battle. There are just so many things that I should be doing with Bella. I literally think we could fill the whole day with therapies for Bella, and in the end not only would she be overworked, but it might not even help anything.
It’s was Bella’s first attempt at self feeding. I waited longer than normal to feed her lunch so that she would be good and hungry. I also made her peanut butter and jelly, something she rarely refuses to eat. I got her new spoon ready to go and put her food in a bowl that sticks to her tray. I helped her scoop food onto her spoon and then I went back in the kitchen to unload the dishwasher and left Bella on her own.
Bella was not happy with me. As you can see the food made it to her eye more than her mouth (and that was more her just flinging it around not her actually attempting to put it in her mouth). She did not want to feed herself and was trying to demand that I stop what I was doing and come back and feed her.
Also not thrilled I was taking her picture. I kept trying to show her how to do it once and then I would prep her spoon with food and leave, trying to get her to want to eat it on her own. But she would just get mad, and not get the food into her mouth. She was also getting confused and putting the wrong part of the spoon in her mouth. This was the first time we had used this spoon and it has a guard on it so that the child can’t get the spoon too far into their mouth, but Bella kept trying to put the guard part into her mouth.
Eventually we got a little bit figured out, that if Mom would put the food on the spoon and then hold her elbow up, Bella would put the spoon with the food into her mouth. So that’s what we did.
It was a very messy process, but hopefully a step in the right direction.
It’s time to start thinking about what we want for Christmas and getting prepared for getting gifts for others.
I made an advent tree (look for it next Sunday on design Sunday), and with the 25 days of gifts we have split it up between the 4 people and 2 dogs in our family. I have been having fun trying to come up with little gifts to give everyone (and I think Jesse is too).
But I think we live a life where there isn’t anything that we need, and I get to the point where I feel bad asking for things. And the things that we actually need say diapers for both kids, are boring and no one would want to gift that. So we spend time trying to come up with something that can be given. Both kids have so many toys that we don’t need anything there for a couple of years, at least until Oliver outgrows all these toys. Oliver is a growing boy, so there is a slight need for new clothing. Jesse and I have a few wants, but again we really don’t need anything. So I sometimes feel like the meaning of Christmas is getting lost. I feel like we should adopt a family and give them all what we would receive, or give toys to the kids at Children’s Mercy hospital who will be stuck at the hospital for Christmas.
I am completely guilty of saying I just want cash or gift cards to go towards something. And even if that’s true, when you are also returning cash or gift cards to the other person, it just starts to seem so silly. Why just pass cash back and forth? Some of the most fun times I have had with Christmas gift giving as an adult have been when you do something like a white elephant gift exchange, or a secret santa where you have to guess who gave you the gifts. These gifts are always small things that can be funny or meaningful, but it’s the joy in the giving for these versus the gift itself.
I also have been wanting to forgo the gifts for a year and just go on a family vacation. Where we can have time to spend with each other and not worry about all the other things we need to get done around the house, or the hours of traveling in the car to see everyone (hoping some extended family would want to go on a trip too).
Now I will be out shopping on Black Friday with the best of them, hoping to score a good deal. But that doesn’t mean I can’t have feelings of Christmas being too materialistic! I love the Christmas season, the music, the lights, the traditions. I can’t wait for Oliver to get gifts from Santa. I just feel like some things are getting lost, or maybe it’s just because we tend to buy whatever we need or want and don’t wait for holidays and birthdays. Maybe we need to go a year without buying anything that we can’t prove is an absolute need and delay the things we want to be gifts. Maybe then I wouldn’t feel the same.
Well that’s my ramblings on Christmas…..hopefully not too scroogelike.
Jesse and I will be participating in the groundhog run again this year. This is the main fundraiser for Children’s TLC, the preschool Bella attended prior to enrolling in our local school district. Children’s TLC is the only non-school district preschool in the greater Kansas City area that supports special needs children. They were absolutely wonderful to Bella, a great help in her socialization and her therapies, and they did it all with such love for her.
If you would like to sign up to run with us click here.
If you are unable to run and would like to donate in Bella’s name click here.
Thanks to all who are able to help in any way!
Last week was nice because we had a full week without any appointments. I am already getting anxious about the number of upcoming appointments. This week we have an appointment with an orthopedic surgeon who specializes in hips, a dental clinic appointment, and we finally get Bella’s expensive $200 orthotics (special shoes). That all takes place on Thursday, one really long day! Then Friday morning we have feeding clinic which is a two hour appointment and evaluation. Next week on Tuesday we see the orthopedic surgeon who specializes in spines to evaluate her scoliosis. I’m hoping we can go to these appointments get some good information and be done (at least for awhile). Although I’m guessing these appointments might lead to more appointments and the worst case scenario would be surgeries. But we just have to wait to find out.
So in preparation for a very hectic end of the week, I feel like relaxing the beginning of this week. Set a few small goals and see where we get to.
Oh and if anyone was following my previous posts and wants to know just how long the family room furniture arrangement lasted? It lasted a whole 5 minutes after Jesse got home from work. And then it was immediately put back to it’s “rightful” place. Although I did get the go ahead to look for a table that can fit in the couch, but the in the meantime the tv tray had to be removed.
And adding to our long list of projects, we dumpster dived for the first time. Well we just happened to be driving past a neighbors house who was throwing away some cabinets, and thought of the new home office/craft room. So we asked if we could take them. We now have 4 almost brand new floor cabinets sitting in our garage. They need to be cleaned and painted and then installed. Two of them were made for sinks, so we might actually use them in the basement bathroom and the other one in the garage for a utility sink, which then leaves me two for the new desk arrangement. Although I have been told I have to finish up some previous projects before I can get excited about painting the walls in the office (which would need to be done before the cabinets were installed). So looks like I shouldn’t really take a break the beginning of this week, if I want to get started on my office.
I suggested to Jesse a while ago that I wanted to rearrange the furniture in the family room. I was told my idea was dumb. Well I did it anyways. So who wants to take a bet on how long it lasts!!
Basically the scoop is, I wanted more room for my kitchen. I desperately need counter space. So I wanted to move the kitchen table into the awkward space in the family room. Therefore I needed to adjust the sectional and move it over. One of the sectional pieces therefore, doesn’t fit anymore.
So as you can see, I moved it to the other side of the room. I also wanted to add a table in the middle of the couch, so we have a place to put our drinks (and lets face it, our plates when we eat dinner while watching tv). I don’t have a table right now to go in the spot, so a cheapo tv tray will have to do. The added bonus, we can now recline all the pieces of our couch.
Here is my latest craigslist purchase and project. it’s an antique oak pedestal table and chairs. What you see in the picture is with the leaf in so it’s oval. I have plans to strip and stain the table a darker color. I also have plains to slipcover the chairs, which are comfortable being high back, but a little too country for me in their current shape.
I am imagining something along these lines when I am done.
I have our old kitchen table in the kitchen to feed Bella right now, mainly because we don’t have anything to currently go in it’s place.
I recently saw a saying that said something like:
I have so much to do, I think I won’t do any of it!
That pretty much seems to sum up my life. I seem to start a million projects, finish a quarter of them, and am always thinking about what needs to be done next. I read all these tips about how to clean the whole house efficiently and quickly in one setting, yet I never get around to trying them. I have all these cook books and great recipes I want to try, yet most nights we revert to classics (chicken tacos, hamburgers, sandwiches, cereal, frozen pizza, eggs, etc). At least we do still eat at home the majority of the time, so that counts for something. There is a bunch of stuff I should be doing with Bella, working on chewing and self feeding, working on rolling and crawling, doing activities, etc. I just don’t have the energy and most times we just play together on the floor. Thank God she has preschool where she gets a lot more interaction and work (therapy) done.
And on top of all that, I recently started working again. I am working from home part time, which is wonderful, but still hard to get any time in while watching the kids. For example yesterday I couldn’t get much time during the day, so I had to work from 8pm till 11pm. Not my idea of fun. So we are currently looking for a nanny/babysitter to come over a couple days a week while I work. I’m really hoping this will be the solution we/I am looking for to balance out my life.
I love these kids….but I need a break from them every once in a while.
And now that I have started working from home, I’m already dreaming about what my office/craft room could be. Although I have no time to work on it, it would be so nice to work in a more organized space. Not to mention our guests would probably appreciate the guest room aspect better.
To go from this crazy unorganized space.
To a merging of the bottom two photographs.
Wishful thinking for now, but I plan to keep my eye open for clearance kitchen cabinets that can be transformed.
We headed back to Nebraska this past weekend. Jesse and I went for the football game and the kids got to hang out with Grandma and Grandpa Sneller. We had an added bonus on Sunday that the kids were able to see Great Grandma Sneller.
I think Oliver might be outgrowing his 3-6month pants. I always call him Huck Finn, especially when he isn’t wearing any socks.
Bella – 4yrs, Beckett – 9mo., Oliver – 4mo.
Neither one of my children were paying attention to the people taking pictures, but Bella did a really good job sitting on her own (with a little leaning help).
I’m currently having a little dilemma. I want to make a bunch of good tasting very bad for you things during the holidays. Right now I have chocolate chip cookies on the brain, except I want to cut up snickers candy bars and add those instead of chocolate chips. But I am trying to tell myself not to make them because I don’t really need to eat them. But they just sound so good. And of course Thanksgiving and Christmas are coming up…….such a hard time of year to go on a diet. I’m pretty sure you can guess what I’ll end up doing!
Bella was laying on the floor and the next thing I noticed, Oliver had rolled over to join her, and Colby had laid down right next to her. Therefore a Bella sandwich.
Sometimes little boys need a rest, who better to be a pillow than your big sister.
For a couple of years now I have been telling myself that Bella has a lot of issues to deal with, but luckily they are developmental and not medical. We have been dealing with her ear infections and teething of course, but I don’t count those as real medical conditions. Bella being the one in pain from them might argue with me. I used to belong to groups with families who had children that were similar in diagnosis to Bella. A lot of them dealt with many medical issues that ranged from minor to extreme. In fact a lot of the kids spent a lot of time in the hospital. I felt lucky that we didn’t have to deal with that.
I’m beginning to feel like Bella’s medical experiences are starting to catch up with her. We see a lot of doctors but it’s more for routine management of her needs. Last week we had her annual cleft palate clinic visit. It’s the one where we are there for half a day and see a round of different doctors, therapists, and groups. Anything that could pertain to a child with a cleft palate.
We started off with plastics, who don’t have much to tell us, and actually have graduated us from the clinic. Basically Bella is so far behind on all aspects, it doesn’t do us any good to attend the clinic, instead we need to see the groups individually for other reasons if needed. I completely agree with this point. We won’t need to see plastics anymore as the only reason Bella would need another surgery would be if her speech was nasally, since she has no speech, that isn’t a concern of ours.
Next was speech. Usually they do a test to see where Bella places. We didn’t do this. They asked some questions and asked if Bella was getting adequate speech therapy. She is currently getting speech through school and I asked for a list of home speech therapists that we could look into coming into our home and doing more therapy if time permits.
Then came occupational therapy. We mainly discussed Bella’s eating and feeding habits. We talked about getting Bella into feeding clinic through the hospital so we could work on chewing and self feeding. We have the appointment scheduled in a couple of weeks, so I will have to update you on how it goes.
Lastly we saw ears/nose/throat, who looked at Bella’s ears. Both looked good at this point. At some point soon we need to schedule another hearing test from brain waves, we are going to try a sleep test versus the under anesthesia test we normally do. I’m a little worried Bella won’t actually fall asleep for it though, being that she doesn’t have the greatest track record with sleeping. Her doctor also wanted to run some labs to check some levels and see if there were some indications it could show as to why she wasn’t sleeping.
So we headed downstairs to get some labs and x-rays done. The x-rays were needed on her back and hips and had been ordered for over a year, but I had never had time to get it done with her yet. At this point we had already been at the hospital for 3 hours and Bella wasn’t in the greatest mood. The x-rays were up first and Bella had to be held down by 3 people to get the films, she was screaming and not happy. It took quite a bit of time to get all the different angles done. I felt bad for her and it wouldn’t have hurt at all, but she didn’t understand that she needed to be still, so everyone had to grip her pretty tight to get her still because as soon as someone's hands were on her, she fought even harder.
Next up was the labs. When the doctor ordered them, I didn’t even think about it actually being a blood draw from her. So I had to sit in the seat and hold her still while another nurse tightly gripped her arm and another one had to stick her with the needle. I was praying the whole time that the nurse would be good and get her with the first stick. Luckily she did.
And 4 hours later we headed home.
Well today we got the results from the lab work and x-rays. The lab work showed that her thyroid levels are off and we now need to see an endocrinologist. They also showed that she is anemic and needs to be on an iron fortified vitamin. This puts a whole new spin on her nutrition. I’m thinking I need to get a degree in nutrition to feed Bella, I’ll discuss this at a later date. Her x-rays were the more disappointing news. Bella has scoliosis (still mild at this point) and her hips are not completely in the sockets. So we will be seeing both a spine orthopedic surgeon and a hip orthopedic surgeon. The question will be, do we think Bella is in pain? If we think she is in pain then for the hips it could mean surgery or some type of brace. For the scoliosis it could also mean some type of back brace. And I honestly don’t know how in the world it would work out to have Bella in body braces. I’m fairly certain she would hate it and not understand what is going on.
I think at this point it is most certain that Bella’s muscle tone is so low that she will never be able to do any weight bearing. In fact the hip problem and maybe even the back problem are due to the fact she doesn’t have strong enough muscles to hold the bones in place. This could mean as she gets bigger we will continue to run into more problems.
So it’s been kind of a disappointing and sad day around here. Just more things this poor little girl has to deal with, and her parents too!!
