a collection of random thoughts and ideas from me, her, and sometimes us
Recently we’ve been to several ophthalmology appointments and they all continue to see improvements in BBA’s eye sight. His eye that was crossing seems to be self correcting and there is no need for glasses, patching, or surgery at this point. (Yay!) His MRI showed his optic nerve is intact an fully formed. All in all, a good visual update.
as we mentioned, we were starting with some developmental therapy for BBA. last friday was his first visit with his physical therapist and it is off to a good success.
we worked with him and the therapist for an hour last friday. our first objectives are to get him to start sitting properly and to open his hands. she showed us several easy to use and easy to do techniques to get started. BBA will visit for PT once a week to help break down his exciser tone. we have been working with him since friday and he is both receptive and doing well with the exercises. we may be getting a chair to help with his sitting for day care as well as splints to help keep him hands from being clinched all the time. depending in the week, his therapy will be in home or at day care.
many of the exercises can and will fit into our regular routine and the easy to do positions will fit right into family live and the craziness that is 3 kids under 3. more updates later.
about two weeks ago, we had the twins 9 month doctors appointment. our pediatrician is actually an NP and has been with us every step of the way since @littlepund was born. it was to be a normal appointment with all the usual stuff. since we’ve been talking to the infants and toddlers team on BBA’s developmental delays, there was a lot to discuss. as the normal charts and activities occurred, we got into his measurements.
his head circumference has been an issue and at this visit it measures 17.25. last month it was 16.25 at the neurologist. b would refer to it as presnickity (sp?) (bad english is my first language).
annnyyywayyy, this growth moved him from the 1st percentile aka smallest to the 15th based on age so we are seeing some good growth and back in the chart!
b and i shot each other these looks of awe and amazement. and in that instance, we were both choking back tears and not jumping up out of our chairs for a chest bump. b couldn’t talk so my response, “you just made her year.” and she had.
he is still 1st for length and height but tracking beautifully with the curve and just an inch of less shorter than BBB. to quote the pediatrician, he has petite features.
we have also noticed an increased amount of releasing and flexibility in his hands and extremities. that’s a top priority when we start PT this week.
in case there was any question, BBB aka the box of rocks is in the 83rd percentile for weight.
so there you have it, some positive news. hard to believe it’s been 9 months. time sees to fly by as much as it has been at a stand still. from those weeks in the hospital to marking each month and week by doctor’s appointments, specialists visits, ER trips, fights to get the proper medicine, surgery, it’s been one giant blur that has been crystal clear.
well, we passed the first two weeks and then passed the second two weeks so by the middle of january, we were officially off the insulin medicine and have grown out of that diagnosis. we only have to test his blood sugar if we feel there is an issue.
well, what’s happened since then? follow ups at endocrine show steady levels and only needing to return in 6 months instead of every 3. we also had a trip to the neurologist to address concerns with his head circumference. he is in the 1st percentile for head size which is a concern for continued brain development and head growth. his soft spots are around a millimeter large (or small) but his plates haven’t fused so we are okay for now. we will return in 6 months for a follow up and possibly an MRI to determine any further intervention at that time. the neurologist referred us to a developmental therapist and to see the genetics team. tuesday, we saw the developmental and occupational therapist and have had BBA evaluated for where he could use some extra support. we’ve known that he could be falling behind and didn’t want to set him back. from talking to the team, most of his issues seem to stem from being too toned (without strength) and not being able to release his hands, arms, legs, etc. because they are too tight. in a few weeks, we will have a full plan and staff to work with him, all provided for free by the state.
then it’s to genetics. appointments have been set up in may and we will be, more than likely, getting some genetic testing to see if there is a condition that may link together his issues.
it’s been a windy road to get this far and we can see him making strides each day. now, it’s just important to get him the specialized help he needs to be back on track.
it’s hard not to enjoy the special quiet moments even more than before. either with BBA, BBB, or @littlepund who clearly runs the house nowadays.
Been a busy week or two. Last week, we took BBA to his follow up pediatric gastroenterology appointment. We really had no idea why we were going but come to find about jaundice and liver concerns fall under GI. Since his bilirubin levels hadn’t gone all the way to down to a normal level, the doctor (after an hour of trying to figure out why we were there and reading his chart) decided we would go on a 5 day medicine treatment to clear him out and then perform a HIDA test. If they didn’t prove to be useful, we would need to get a liver biopsy and possibly exploratory surgery by the end of the week. They were looking to run out a rare condition known as biliary artesia. After the 5 days of medicine and being on pins and needles assuming we would be the 1 in 10,000 they did the first test. We were scheduled to get follow up tests all day Wednesday every 4 hours.
Thankfully after the first set of tests, they could see the tracers and all the digestive organs and there are no problems with liver, gallbladder, bile ducts, etc. And we didn’t have to go back for any more. As well, his d bilirubin levels have come down from where they were and should be stabilizing around the normal level. Have to follow up in a month.
Next came an ultrasound on his arm to see of the blood clot from the PICC line in the hospital resolved itself. Another good result. No trace of the clot at all! At our follow up with pediatric hematology, we were officially removed from the blood thinner which means no more injections or ports in his leg. Down to oral medications.
Since then we have also been removed from another medicine. Hematology is trying to get up one of his numbers that relations to fighting infections. We have a follow up blood test for that this week.
Also have their 2 month checkup this coming week. Hard to believe it has already been two months! BBB meanwhile is a championship eater and burper. And generally sleeping through the night for a week or two. Both still need to work on tat pooping regularly thing but they byare coming around.
Belly rigidity seems to be improving and less concerning for the team. Feeding tube was back in but only to be used if he wouldn’t feed out of a bottle. He was starting with 10 ml’s to see what’s happening late this afternoon. This was the first test to see if it’s better and resolving. Will still get the baby gatorade (vitamin and glucose drip) for now. Bilirubin continues to be on the higher side and might be the next and hopefully final hurdle.
I know I haven’t blogged in months but it’s crazy to me that earlier today people were complaining about standing in line to vote. It’s your civil duty to vote. Hundreds of thousands of people have died over the years for our democracy and people will complain about taking part in it. I am sure if they went to countries in the Far East or Middle East, they will feel the opposite.
You’ll stand in line overnight to get 50% off of a TV on Black Friday or the new version of the iPhone but you can’t wait an hour to do your civil duty?! Give me a break!
The other thing that fires me up is that people say they get intimidated at the polls. If you don’t talk or yell at the people outside the polling place, you won’t get in an argument and be afraid to cast your vote. Clearly it’s time to require valid IDs for everyone voting, they could control these things and the whole process better.
Anyway, that’s the end of my rant. Stand in line and read your ballot since you can’t use your phone and stop complaining.
i’m a lover of bacon like many others. i wouldn’t say it’s my favorite food but a close second or third and can put it on everything. well at camden yards, at the jack daniels stand on eutaw street, they have bacon on a stick. it’s a slab piece of bacon that is grilled/smoked prior to ordering. once ordered by the customer, they get it out of the hot box and dip it in a vat of maple glaze. now, if you thought bacon on a stick was good, maple glazed bacon on a stick is even better. it’s not an every day item, but definitely an occasional snack. watch out, after i ate about half of the bacon, i nearly dropped the other of the bacon on the floor.
oh and it’s a little messy so make sure you get some napkins. i think i had maple glaze on my face until we got into the car. haha. for $5, it was a nice treat and not as expensive as i would expect for ballpark food. it’s meaty and delicious and with that being said, i’d give it an A rating.
this is one of the several new food selections at oriole park at camden yards. next time i might try the crab and mac ‘n cheese hotdog. we also setup a meeting with some of the other partial season ticket holders that sit in our section to try out the new dempsey’s bar. they tried it and although they enjoyed it, they had a really long wait for some carry out soup. i am sure it will get better as the year continues though. @rsharrow had a picture of the new bar on his instagram account last night. it looks pretty good.
have you tried any of the new food selections? beer can chicken, perhaps?
ps… do they have bacon on a stick at the renaissance festival? i’ve never seem them there. guess i was too busy looking at the turkey legs and steak on a stake.
a few weeks ago after baseball promotions came out for all of the local teams, my buddy and i circled the april 14th bobblehead night for strasburg of the nationals. everyone who follows baseball knows that he is a flame thrower and has really brought the fans to the stadium. well, as time went on, he found out that he couldn’t make it so bee said she would go with me. she’s really gotten interested in baseball the last few years now that we have a partial season ticket package to the orioles and i think it makes her happy to see me doing something i enjoy.
since the game didn’t start until 4:05, we decided to do something else we enjoy, check out some great art and with one of my favorite artist’s having a special display at the national gallery of art, we made the trip down earlier in the day. not to mention, we had to get to the stadium early to ensure we got one of these prized bobbleheads. so anyway, we got down there and checked out the Picasso drawings exhibit. the detail and intricacies of his works are incredible and something i really appreciate about his work. the variety of this collection was also large and spanned several decades. there were many different techniques and not just the usual cubism or blue period drawings that one might expect. the detail on some portions of the work versus the other pieces make you wonder what he was thinking or if he was working on his early skills. unfortunately, i didn’t take any pictures in exhibit to post and one guy got yelled at for being on his phone so i didn’t want to be that guy. as we finished with the Picasso drawings, we walked through some of the Degas, Monet, and some Rodin. we didn’t get much time after that to move through many of the other exhibits and there were a ton of people checking out the japanese scrolls exhibit, but we didn’t want to wait or really have time. after we left, we stopped by potbelly for a quick bit to eat and then headed over to Nationals Park to take in a ball game. ps… you can see a full size version of the thinker at the BMA and you won’t have to leave baltimore.
this was bee’s first trip to nationals park and my first one of the season. i made a couple trips down last year to see the orioles play as well as one game against the braves when her dad was in town. once we got there and got our tickets, we waited in line for about 20-30 minutes. we probably could have gone in earlier via the centerfield gate, but didn’t want walk around. plus we were calming down from almost blowing through a red light that i never really saw. those stoplights on the right and not in front of me get me every time. that’s neither here nor there but needless to say, we had a good time after not getting in an accident. we got to see edwin jackson pitch a great complete game. hopefully he signs with the orioles next year. we liked the open air feel of the stadium and the different food selections they have. we got some nachos and a couple free sodas. after the game ended, we went over to bee’s father’s favorite pizza place in rockville. when we called him about it, he recited the phone number exactly even though he now lives in nebraska. giuseppe’s makes a really tasty pizza and has a great crust. it’s more doughy then any other local pizzas that i have had. we left full, happy, and with a burnt roof of my mouth. all in all, we had a great day. enjoyed several of our favorite things to do and even ate some pizza.