Always catching up....

I am such a bad blogger....I am so jealous of those who blogs I follow who manage to update every few days....if I did I wouldn't have to write such a book!!! I am much better at updating my facebook account. But here we go...

Tom has recovered from his car accident but was pretty sore for quite a while. If he had done a repeat x-ray I bet they would have found a broken rib. I am very much enjoying my new minivan and the joy of doors that open with a button!! Even Tom admits that it is a very smooth ride!!!

Last month I celebrated my 32nd birthday... a fairly uneventful birthday...but I did get to travel to NYC for a girls weekend with my friend Ashley from Florida. It was so great to get a chance to catch up with a good friend! We got to see the city, do some shopping, see a show, and I made sure I got to eat a real piece of NY pizza!!






I am so happy that the Kansas summer is finally upon us!!! The cold winter seemed to drag on forever followed by the wet spring...now we can finally enjoy more time outdoors and put Michael's swim lessons to use at the pool. I just have to be careful about keeping Sofia out too much in the heat...so far we are seeing a repeat of last summer where she does not tolerate the heat well. She becomes very irritable and very "floppy". To try to help combat this I bought her a cooling vest you activate with water that she wears over her clothes and a fan that attaches to her stroller. I am hoping for lots of time in the pool this summer with both kids once the pool warms up a bit more...neither Sofia or I like the cold pool...it doesn't seem to bother Michael!! He is continuing with swim lessons over the summer and I am hoping he will become more confident and will get to the point where he doesn't need to rely on his "bubble" to help him swim. Preschool ended last month, but I enrolled Michael into a summer preschool program...he starts tomorrow and has been asking for the last couple of weeks to go to summer school :)

A day at the botanical gardens with friends

Michael loves to swim (with his bubble float)

Sofia has had a great couple of months!!! We received the results from her genetics testing done a few months ago and it was negative for a mutation in the MECP2 gene...the genetics counselor mentioned some other genetic mutations that we could test for, but we decided against it for right now. Her most recent doctors appointments involved seeing Rehabiliation Medicine, at which time she had a hip x-ray done, which was normal (they were checking for hip dislocation since sofia is so hyperflexible). She was also fitted for foot orthotics called SureSteps to help provide better foot and support. She looks great standing in them and they are helping to make her legs stronger. And after some thought I also had a stander ordered for her...have not received it yet (takes time with insurance). The stander will provide support while keeping her weightbearing on her legs to strengthen them. It is going to be pink!!!
She also saw the developmental doctors...love the doctors, but hate those appointments. Once again she did poorly on their tests...I hate those tests!!! And when Sofia is not interested or is refusing to particiapte she tends to use avoidance...she will just not look at you and look past you...so that often appears as a social avoidance, which is not Sofia at all!! Even with her limited mobility she will manage to roll right up next that mom and baby at our playgroups and flash her smile and big blue eyes at them!!
So we will follow-up with those doctors in 6 months and next up will be neurology in August.
But she has been doing great!! About 2 months ago I decided to try a major change in Sofia's diet...I decided to cut out cow's milk products. So I changed her over to soy formula, soy milk, etc. Definitely have to be more creative since so much of what I used to add to her food to add calories involved dairy products. The diet has really agreed with her and I was even able to stop her reflux medicine. She has also been good and healthy...no colds, no ear infections...so nothing to set her progress back.
Sofia is now babbling...lots of mama's, baba's, yaya's. Her signing is a work in progress...she is great at "more", "bubbles", "all done". Feeding is better....she actually wants to eat now (and lets me know it), but still won't feed herself and dislikes chunky food. Her most recent big acheivement is that she can now transition in and out of sitting...it is so great to look over and see her sitting with a big smile on her face because she is proud!! She is getting so much better being up on her hands and knees...know she just has to learn that she can be mobile by crawling instead of rolling. Sofia also loves to stand and practice pull up to stand at the couch...she still needs support, but not nearly as much. Her therapists are also thrilled with just how well she is doing.
This summer her therapy schedule is jammed pack...we have physical therapy twice a week (alternating between in home and outpatient), outpatient speech therapy once a week, at home speech twice a month, at home special ed teacher twice a month, occupational therapy once a week (also alternating), and our newest addition is hippotherapy (horse therapy) once a week for 6 weeks. It all depends on the day and Sofia's mood just how well she does in a therapy session. She seems to be enjoying herself more and I often find her getting upset when her therapist is no longer paying attention to her!

Sofia at hippotherapy

If you have made it through this book of a blog...it is time to share some more news!!! We are expecting baby Lupoli #3!! Not planned, but also not a total surprise :) I will be 10 weeks tomorrow and am enjoying the joys of the first trimester...nausea, headaches, being tired all the time, and mood swings ;) We are excited and nervous at the same time. If definitely puts a new twist on plans for this next year!! Due date is Jan 12th...and I am hoping the dreams I have been having of twins is not true!! It will be a challenge having a new baby for many reasons...and how glad are we that we decided on the mini-van!!!

Natalie

RIP Jeep / Proud to own a minivan!!

What a week it was!!! I was working on the post below (for Easter) when I got a call Easter Sunday night from Tom that he was just in a car accident just after leaving work at the ER in Topeka. His call was a quick one and he used words like "Jeep flipped" "I am hurting" and such that it was a jump up at 8 pm and quickly get myself together and the kids for the hour plus drive to Topeka. To make matters worse it was raining and I hate driving in the rain. Tom calls back to say he is okay but is going to the hospital to get an x-ray. So I finally make to Topeka....clutching the steering wheel and driving 55 on the interstate the whole way in the rain. Plus, Sofia decided to get sick and vomit all over herself about 3/4 of the way into the trip. I had to pull over on I-70 and ended up with a state trooper pulled up beside me asking if I needed assistance....I wish I could have requested he drive us to Topeka!! Once I get to Topeka I am completely dependent on my GPS since I have no clue where I am. Tom was all done at the hospital when I got there...luckily just some bruised ribs. Things could have been much worse!!! Then we got to ride home in the rain with the smell of vomit in the car...


Unfortunately, the Jeep did not make it. Tom had the Jeep for 13 years...that Jeep has been around since we started dating, through medical school, residency, and we were hoping through fellowship. It was totaled and we spent this week getting everything in order and buying a new car. My Mercury Mariner was passed over to Tom and I am now driving the family minivan!! We decided on a 2009 Toyota Sienna...it was a purchase based on family needs. Enough room for all four of us plus guests now, and looking to the future if we were to add on to the family. But it is a smooth ride!! Tom was driving it yesterday and seemed to be much more impressed than his test drive earlier in the week (but he was in a bit of discomfort during that drive).

Just a week later and Tom is feeling much better. He is back to work in Topeka today, but is seriously thinking about not traveling there as much to moonlight....he will try to stay closer to home.

Michael seemed to enjoy the whole process of buying a new car....he had lots of questions for the salesman...."what is that?" and "hows that works?" He stumped the guy a few times. But the best part was when we were trying to keep the fact that we needed something ASAP quiet, but Michael blew our cover when he told the salesman that "Daddy's car went crash, and daddy hurt his back".

Sofia working with her physical therapist

It's been a good week for Sofia!! She is even closer to crawling now!! She is really trying hard to get up on her hands and knees. She likes to rock her butt when she has her knees under her too. Practice, practice, practice!! The next couple of weeks include appointments with Rehabilitation Medicine and Developmental Medicine. I am not expecting much from them...just more of the fact that she is clearly behind in her global development, and to keep going with therapies. And I just continue to be her advocate and her cheerleader!!

Here are some cute videos of Sofia:



Natalie

Happy Easter

Well, this was suppose to be posted on Easter Sunday, but I still had yet to add pics and if you read the post above you know why it didn't get finished...but here it is:We are having a great day of relaxation today while Tom is off working a shift in the ER (it is rainy and cold today)....since he had to work on Easter we celebrated yesterday with the Easter bunny :) Michael just loves Easter because of all the chocolate! It is so much fun to see and hear his expressions...he was surprised this year with a big boy bike with training wheels. He loved his trike, but he was getting just a bit too big for it. His focus yesterday was all about riding his bike. He fell a few times, but he got right back on. I am hoping for more frequent warm days so we can get him outside to ride. As the cold days keep on coming it sure makes me miss Florida at this time of year....Spring was always my favorite time in Florida!!

As always Sofia and her therapy sessions keep me busy....last week we had an appt everyday....we've had some weeks where we end up with more than one a day. I took her for her evaluation at KU medical center and she ended up just barely not qualifying for the early communication study. They want children that are globally delayed, but they can not include autistic children in the study, so they perform a screening that is designed for 2-3 year olds and she didn't pass. They knew it would probably be difficult for her to pass it because of her age and delays, and they emphasized that it does not mean she is autistic. They test involves basicly seeing how she responds to toys and appropriate play. It was quite an experience because it was an hour and a half of testing and I left the room and watched her on a monitor. They had her sitting in a supportive chair, but you could tell she was getting tired and I think bored...so I had a feeling it was not going well. It also gave me an outside view of Sofia watching her on that monitor, and it really stirred the emotions. I try so hard to focus on what she is able to do, and this really made me look again at what she is not able to do. As always, she captured their hearts with her smile and blue eyes...so the researcher told me that they would consider bringing her back to retest if they are unable to find any other children the fill the 6 spots that are left by the end of April. It was tough on me to go thru this evaluation, but it is all about what is best for Sofia.

But let's talk about the good stuff....Sofia is still working towards crawling...at times we see her trying to get knees and arms up underneath her body at the same time, but she is not quite there. She can really push way up on her arms and get her belly up, and she pulls her knees together way up under her, just not at the same time. Sofia just gets where she wants to go by rolling....lately she loves to roll into the laundry room so she can bang her feet on the washer and dryer. The other day I caught her in this small storage area pulling christmas bows out of a box I had them stored in. She sure has her curious moments :)

Other good stuff....Sofia now signs "more" when she wants you to play more, bounce her more, blow more bubbles, or basicly when she is having fun and doesn't want you to stop. And she can wave "bye-bye"... she did for the first time when her special education therapist left after a great afternoon of play therapy. It is such a great feeling to see her do these things!!

Our biggest issue is her feeding....Sofia has such oral defensiveness....her appetite is all over the place....it is just so hard to get her interested in food some days. She was doing really good with holding her own bottle and grabbing the spoon to help pull her pureed food to her mouth, and then a couple weeks ago she was feeling sick with a fever and congestion and wanted nothing to do with eating or drinking. Her appetite picked up some, but she just wants me to do all the work. She throws her bottle once she realizes she has to hold it. Anything other than pureed foods are still impossible. She seems to change her mind frequently in what she likes to eat. I feel like we are so far away from her being able to feed herself. I have to be creative in pureeing different types of foods that are packed with lots of calories for my skinny baby girl.

I almost forgot, but we had a little "uh oh" when Sofia decided to fall face first into the deck railing on our patio on one of the rare warm days we have had lately...she cried and was okay within a few minutes....well later that night I noticed she chipped a top front tooth....ugh!! We went to the dentist and all looks okay, but now her gappy smile has a bit bigger gap :) So now I have a child with a gray front tooth and one with a chipped front tooth (same tooth on both kids)...don't I just win the mother of the year award!! Luckily they are just baby teeth ;)

No news from Sofia's latest genetics blood work.

I just got Michael started in swimming lessons...we are just two lessons into it...he is very scared when he first gets to class, but is pretty proud when he is done. He has a drill sargeant of a swim instructor....but I think coach Ann may be just what he needs. I have gotten warnings from some moms about how hard she is, but then others who sing her praises. Michael has learned quite quickly to listen to her! I think she maybe good for him!!!



Hope everyone had a wonderful Easter....check back for more updates!! I am going to work on a post to add as a link that will give a brief overview on Sofia's history for those that are new to the blog or want to know more....keep a look out for it!!

Natalie

Genetics Appointment & Sofia's super week!!

We had our long awaited appointment with the genetics clinic at Children's Mercy Hospital yesterday. Overall, yesterday was just a long day.....as I was just about ready to take Michael to preschool we get a call from the clinic asking if we could fax the records we have from her work-up done in Florida, and then an "oh, it has you in the computer as going to the South clinic, but that is wrong, you need to come downtown".... all of a sudden we (I was so thankful Tom was with me for this day) need to readjust our schedule for an extra 30 minute drive...so it was off to preschool for Michael, then to Sofia's PT appt at the south clinic, go get Michael early from preschool, then drive downtown, exam room for 2 hours, one hour to get labs drwan, and then finally off to get lunch/dinner, home by 4:30, Tom finishes packing and he leaves for the airport at 5:30 for a weekend allergy conference....I was just exhausted, and you can just imagine how two small children get with long doctor's visits over lunch and naptime!!!
But back to the actual appointment...it basicly consisted of what we have gone through before: Sofia's history, some of Michael's and our medical/developmental history, family history. They had already looked over all the tests that had been done already before we got there, the doctor did an exam and took some measurements (hands, feet, ears, etc.)....she didn't comment so much on any "dysmorphic" features and we had Michael with us so they could see the similarities. Sofia doesn't have any medical problems (which I am so thankful for), so there are no medical problems to pair up with the development delay, so that rules out so many "syndromes". The blood tests she already had in Florida also ruled out so much of the obvious and not so obvious things (metabolic disorders, chromosome deletions or multipications, and several syndromes). And since she is a girl it automatically rules out a lot of x-linked disorders that are only seen in boys. The doctor basicly didn't see anything that really stood out to say "I think she has this". But she did decide that we should we should go ahead a check for a mutation in the MECP2 gene....she doesn't feel Sofia has the syndrome associated with it (Rhett syndrome), but that was one that was not looked at in the initial work up. I mentioned mitochrondrial disease, and she didn't feel Sofia fit into that picture since she doesn't have multiple medical problems like many kids with mito have, but I have seen many stories online about how no one thought it could be mito, and it was!! But this doctor was clear to say that it was a colleage of hers that was more familiar with mitochondrial disease. So that maybe worth investigating in the future. So that was the appointment...then we ended with a trip to the lab to get Sofia's blood drawn, Sofia complaining because I did not bring enough milk (oops....but I swear in her grunts and crying for more she would look at her bottle and sign "more"...so that was exciting since we have been working on that sign for a couple of weeks), Tom needed coffee, and Michael wanted to go see the train and the star displays at the children's hospital (his reward for being so good...good for 2 hours in an exam room!!) But another appointment with no diagnosis...which is good to know no one feels she has any scary syndromes, but frustrating when you are looking for answers and want some idea of what the future has in store for your child. I have learned to take it one day, one week at a time and try to be positive about progress, even as slow as it is (Sofia speed!!)
It has been a great week for Sofia :) I think we are finally out of our stretch of cold and flu season, so she is feeling good and it shows. Or maybe it is my experimenting with pigtails in her hair and she just knows she looks cute!!! She is practicing her core strength and balancing skills so much more now by sitting and really moving her legs around, pulling her knees up to chest while she plays with her feet, sitting with legs straight on in front of her....at times she is really pushing up high onto her arms when she is on her tummy, today did sort of a transition into lying from sitting on her own (she intentionally wanted to go forward to reach her toy, she had her hand down, but then followed through with a fall onto her face....but better than her usual falling backwards to get down...her physical therapist was here for that and she loved it!). And you can so tell that she really wants to just crawl, she just can't get herself up onto all fours yet...she does do sort of a side to side rock that gets her forward on her tummy, but rolling is still her primary way she likes to get around. But it has been just this past week that all these new little skills have appeared...and you know its a great thing when the therapists can see it!! Sofia is still not to happy with her new physical therapy, but she was better this week....I can tell she is just still uncomfortable with the environment of the PT gym and doesn't know if she can quite trust this new therapist. I must look pretty funny with all my attempts to try to make Sofia smile and laugh while the therapist works with her so she doesn't cry. On the speech and communication front, we now have a special ed teacher that comes to the house every other week. What she does is similar to the speech therapist...lots of playing, so Sofia loves it!! Sofia added a new sound of clicking her tongue just two days ago...little things like that show us her muscle tone is improving in her oral area and that she is trying to mimick me. And we have been working on signs for "more" and "all done"....I randomly see her making the sign for "more", but like I said above, I think she may be figuring out how to use it! I also just got a call to set Sofia up for a evaluation to get Sofia into an Early Communication study through Kansas University....everyone seems to think she is what they are looking for. My calendar is filling up fast!!
Michael is doing great...we got to visit his "summer school" today....basicly a 7 week preschool program. Preschool ends with the school year, and he likes it so much I was hoping to find something for the summer and his current school doesn't offer anything. He liked the visit and he wanted to take his coat off and stay and play. His poor front tooth looks worse just like the dentist said it would....his cute smile with a dark tooth is just so sad :( Lately he wants every toy....and when he is focused on wanting a certain toy that is all he talks about....it is enough to drive me crazy at times!!! But his sweetness makes up for it!!!
I am home alone with the kids again this weekend. Tom worked 12 hour shifts in the ER on both last Sat and Sun, and this weekend he is gone to Washington, D.C. for an allergy conference. I am hoping he will have some fun while he is there...he has been working so much that he deserves it!! I am going to get to have my girls weekend away to NYC at the end of May...I can't wait!!! But I am sure I will be a bit nervous about leaving Sofia...she is such a mommy's girl.

Natalie

18 months old - check out my pigtails!!

My gappy grin!!!

Look at where my knees are!!!

March is here!!

It's been a busy few weeks around here (as always...) Tom is working lots of shifts in the ER...I hate not having him at home with us, but it is nice to feel a bit more financially stable. The hours he does now still can't compare to residency back in Tampa! I have my days where I miss working and having that professional part of my life...but I keep reminding myself am where I need to be right now, home with my children!!

I am finally feeling better....for about two weeks I felt horrible!!! Headaches, body aches, fever, cough and congestion. I am thinking it was the flu (I did get my flu shot) because none of my typical drugs I take for when I have a cold to get me through my day were working. I am just glad the kids and Tom didn't get it (or at least it was milder...Sofia did end up all congested and snotty last week and Michael had a little cough). But now we all all healthy!!!
The big event for Michael in the past couple of weeks was he had his first trip to the dentist...partly because it was just time since he is now 3 1/2, but also because he had a little run in with a shopping cart at the grocery store....he ran full speed towards me and slammed his mouth into the cart. Lots of crying, but no bleeding or swelling. He complained that his tooth hurt at first, and then no complaints once the tears dried. Well, his top front tooth started to change colors. It looks horrible in my eyes!! Michael did great at the dentist...he let her look in his mouth, they took an x-ray, and then he got ice cream and a balloon!!! The tooth looks okay on the x-ray, and the dentist feels it will in the short-term get worse looking, and then slowly fade over a few months. He goes back in May for his first cleaning. Tom and I are both about to get around to seeing a dentist also. I have been putting off the fact that I need my wisdom teeth pulled...I just need to do it!!

Busy days for Sofia as well. We increased her physical therapy from once a week to twice a week with the additional day at an outpatient clinic. So far she has cried through the two sessions she has had there, but I think she just needs to get used to this new environment and therapist. Their evaluation put her gross motor skills at about the level of a 9 month old. We are also increasing her speech therapy from once every two weeks to every week with the in home therapists. I am also thinking about adding in more outpatient clinic speech and occupational therapy after I see if insurance covers the physical therapy. I am hoping that I can get Sofia enrolled in an early communication research project through Kansas University. Sofia is on the list to be possibly screened this next month...they seem to think she fits what they are looking for (communication delays in a globally delayed child with no significant medical problems - that is Sofia!!). The study would randomize Sofia into receiving speech therapy in our home either once a week or FIVE times a week for 9 months....and that is on top of what she already gets!! They want to see in frequency of therapy makes a difference in language development. So cross your fingers that we get a call....they said that we should hear from them in a couple of weeks!! So we have a lot of people in our home during the week...luckily Michael takes it all in stride that all these people come to see Sofia....he just stays out of the way playing the computer and pops out every once in a while to see what's going on!!

We had a couple of appointments this past week. We saw the neurologist...an uneventful appointment. He reviewed her hearing test from last September...minimal to mild loss in low tones on the left side, but not concerning. Her neuro exam was unchanged (which is good). He feels reassured b/c she is so alert and does not want to repeat any testing now (no EEG or MRI), and may think about a spinal MRI at her next 6 month f/u. But a lot hinges on the BIG genetics appt on March 12th and the neurologist will do whatever they feel needs to be done. Sofia also had her 18 month well check with her pediatrician. Fairly uneventful...I just hate that every time they ask me all the development questions for her age and every answer is "no". She remains long and skinny...33.5 inches long (92nd percentile) and 19 lbs 12 oz (dropped to 3rd percentile - side note: she was almost 21 lbs two days prior at the neurologist's office, but her growth gets charted off the ped's scale). The pediatrician was slighly concerned b/c he won't necessarily see her again until she is 2, but he wasn't incredibly concerned. I figure Sofia has been on and off sick, during which time her appetite drops off, and she is so active now that she is burning more calories. We try to get as many calories as we can into her each day, but me just shoveling food into her goes against her feeding therapy and trying to get her interested in feeding herself. We are somewhat at a stand still with her feeding...she does like to grab the spoon and pull it to her mouth when I feed her, and she likes to play with her food....but no putting food in her hand to her mouth. Her feeding therapist (OT) thinks it will come as her cognitive skills improve and she decides that feeding herself is interesting.

Sofia has been doing great these past couple of weeks...she spends so much time on her tummy playing now and I can see that she is trying to figure out how she can just move forward and not have to roll all sorts of different ways to get to where she wants to go. She will eye what she wants while on her tummy, roll, look for it again, and adjust herself to roll towards it. She just doesn't have a lot of stability in her shoulders b/c of the hypermobility, so it is hard to support herself up on all fours. She is all about exploring...today she made her way under the computer desk and was playing with the cords. The last few play groups we have gone to she is all about rolling around to explore her surroundings. She is all about clapping her hands now too!!! She continues to slowly get stronger at Sofia speed!!! And today Sofia was so excited that I picked her up she wrapped her little arms around my neck and shoulder and squeezed!! It was like a real hug!! She has been really great at snuggling ever since she gained better trunk control, but typically her hands always go to touching my mouth (she has this thing with touching mouths and putting her fingers in your mouth...I am trying to get her to learn "no" with this habit). So I loved the hug...and she seemed pretty proud of herself too!!

No new pictures this week of Sofia...I was all about videos these past couple of weeks, and none of them are small enough files for the blogger upload...next time :) But I do have a couple from the night Michael decided he wanted to eat all our "clams" (Tom had made mussels...I can't believe Michael ate mussels...just look at his plate!!!


Take care everyone...I will update again after our March 12th genetics appointment!!!

Natalie

Happy Valentine's Day

Well, I got a bit behind in my weekly updates...oops!! So time to catch while I have a little piece and quiet with both kids napping (such a great sound some days!!)

In my last post I was saying how healthy the kids were and how great it was since we had a ski trip coming up....well we ALL got sick the week before with sore throats, congestion, etc. Sofia ended up on antibiotics for her ears (I don't think she needed them, but her peds doc thought it wise since we were traveling) She hates taking medication, and I hate trying to get it into her. We were all near the end of our illnesses when we left for Colorado, so we got to enjoy our vacation without being too sick!!



Tom, I and the kids flew to Denver from KC, and met up with my in-laws to go to Copper Mountain. Tom and his brother were the only real skiers....I skied, and I did pretty good, but I think I may have over done it a bit the first day...I tried to keep up with the boys and only fell a few times. The next day I took lessons with my father-in-law and sister-in-law (they were not skiers at ALL, but they did great), and just went at my own pace on the 3rd day. I think I did great for only have down-hill skied just a few times in my life....I think the years of cross-country skiing in my early years with my dad and brother in New Hampshire helped me a bit.
The kids went to the ski resort's child care center...Michael seemed to really like it. Sofia did well also, except she didn't really eat well for them. I think I handled it harder than Sofia did being apart from her....I worried so much that were not going to be able to handle her little quirks that have just become second nature to me. She did really well overall with the traveling, but it always seems to put a step back with therapy when we travel. So no more traveling for a while!! Michael loved playing around in the snow while we were in Colorado....we tried ice skating with him but he thought it "was too slippery". He enjoyed going tubing...it scared me watching him go so fast down the hills (always had Tom holding onto his tube of course). You knew he was done when he would announce that he was cold and needed to warm up. Sofia hated being outside all bundled up in her snowsuit...she would just become like a rag doll and not move. I would just see her eyes moving back and forth and looking at me with her eyes saying "help me".



The trip was great, the weather beautiful, I got my massage I had wanted, it was great to see family, and of course the 5 day vacation seemed to come to an end so quickly!! The flight home wasn't so fun...Sofia spiked a fever at the airport and Michael just whined, and whined, and whined some more....I hate whining. Then we get home and it starts....Sofia throws up. She throws up again the next day. No appetite at all. I am just trying to keep her hydrated. More throwing up the next day. And she was just wiped out!!! So no therapies last week. By Sunday she got her appetite back and now she is her happy self again!! But being sick sets her back with progress in her therapies...so you combine the traveling and being sick and not too much has happened in her progress. I hope she is in the mood for therapy next week b/c I have the schedule packed....we are starting additional PT that is part of the Children's Hospital where we will have more access to equipment to try with her. I sure hope we can pull out some new tricks that will be more helpful for her.




Tom has been busy working extra shifts at the VA Emergency Room....he was gone last Sat and Sun and is doing it again this weekend. Doing this has made him realize just how happy he is that he decided to do Allergy!!! We had our Valentine's dinner at home last night with some yummy filet mignons and a couple glasses of wine...wish we were having it again tonight!!

Enjoy the pictures and I having included a cute video of just how excited Sofia gets around her big brother!!

Natalie

Sofia Update

It has been a smooth transition the past two weeks with Michael going to preschool...he seems to really like it and his teacher reports that he has adjusted very well and is making new friends!! He loves playing with other kids...it can be quite funny to listen in on the conversations 3 year olds have!!! And Sofia and I love having a bit of alone time every week as well :)

Both the kids have stayed healthy the past few weeks....I am soooo glad too since so many other kids around us seem to be getting sick!! Plus we have our family ski trip to Colorado at the end of the month and I hope the kids stay healthy.

Sofia has had a good couple of weeks...she continues to grow stronger and overall just more interested in everything around her. Her speech therapist had not seen her in a few weeks b/c of holidays and scheduling issues, so when she saw her she seemed really pleased on the improvement she could see. Sometimes it is so hard to focus on what Sofia can do when there is so much concern over what she can't. Sofia has become much more vocal (and she lets me know it!!) and more expressive, but no mama's or dada's yet. Now she loves to mimic blowing raspberries and trying to clap her hands....and she is great at using her blanket to play peek-a-boo now...these are new for her is just the past two weeks. She also just learned how to hold her bottle all on her own!!! Except now she likes to just play with the bottle at times and bite the nipple and she gives herself a milk bath!! And she is getting in so many teeth now!!

Sofia still doesn't care for her physical therapy much....Sofia has mixed issues with low and high muscle tone now and she tends to kick in her high tone during certain aspects of her physical therapy, which makes it difficult to get her to do the positioning we want her in. So is has become a challenge to figure out what tricks work for her. She was demonstrating her new crazy little pose yesterday for the therapist where she is sitting and slouches back and tries to pick up her feet and holds that pose...we think she wants to lay down so she can use her feet to play with a toy, but is learning that she shouldn't just fall backwards...it looked like it was giving her quite an abdominal workout :) She is spending more time playing on her tummy on her own, so we love that!! And she just discovered how great the doorway jumper is...about a week ago I put her in like I occasionally do, and she just took off jumping!!! Now she cries and whines when she sees it b/c she wants to jump :) Love it!!

We just started Sofia on Prevacid for reflux...I was becoming suspicious that she may be having a problem. So far she is tolerating it well and has not spit up since we started. I am curious to see if any of Sofia's sensory issues with her mouth improve with this medicine. If she does have silent reflux like I suspect, it may be a contributing factor.

Sofia will be 17-months old tomorrow, but of course still has pretty significant delays. Upcoming appts include a follow-up with Neurology, which may or may not result in a repeat MRI and/or EEG. Sofia has her 6 month followup eval for her current therapy services next month. I am going to get her started with more physical therapy and speech through the Children's Hospital. She has an appt with Genetics in March....I think this may be the appt that could possibly bring us closely to a diagnosis. It will probably involve a lot of blood work and possibly a muscle biopsy. Then we have Rehab Medicine and Developmental followups in April. She will most likely get fitted with some sort of foot/leg bracing once her physical therapist feels it is appropriate. We don't want to push Sofia to hard towards walking yet since learning how to crawl is a very important skill, but they also feel that she might not end up so much of a crawler. I would love to see her walk by the time she is 2, but since she isn't crawling yet, I don't know how realistic that is. It seems to be taking Sofia 2-3 times longer than typically kids to learn skills.

Of course I have to post just some oh so cute pictures and video of my sweet angel and her piercing blue eyes!!!