Apparently Amber missed the memo that's she's not supposed to be able to do most things that "normal" babies do. In my last post I talked about how she had started sitting unassisted on our laps. I've seen other babies use a boppy to help them learn how to sit. So this morning I thought I'd give it a try with Amber.
Yes she's SITTING! Something we never thought she would do! This is her second try. At first she was really excited about throwing herself backwards but once she got over that she did really well!
We also played around with sitting her on her squishy pillow with the boppy behind her. In this position she can put some weight on her feet to help stabilize herself and hopefully reduce any pain she might have in her back (something we've had issues with before). She did really well in this setup too.
On the floor she's forced to have her back straighter. We thought this would be more uncomfortable for her. Actually she seems to breath better this way and it seems that she can get her balance better too. She sat this way for a little over 20 minutes! The more she sat the better she was at it. She caught herself from falling back and was able to play with a few different toys.
She loves it and did not want to take a break!!
I think this accomplishment and the fact that she's feeling/sleeping a lot better is the best way to start out our busy week:
Tuesday, we have a home visit with our PACT team (the palliative care people)
Wednesday, Amber starts her trial with her gait trainer (walker)!!!
Friday, Amber has a 18 month Well-Baby visit/follow up to being sick
Can you believe it's been a month since I've posted anything. I feel really bad in a way but I just haven't felt like blogging. There hasn't been much excitement here. We had a great New Years with our PA family and had a lot of fun but it was way to short. Honestly this has been a pretty boring month, it's been cold, people are sick so we're staying in!
So you're probably wondering whats going on with the little princess. She is very talkative, she can even say her name now!! She's still gaining muscle strength and even got fitted for a gait trainer! We're looking into water therapy programs for her, to increase her strength and get her stretching in in a more comfortable environment. Amber is definitely not a baby anymore! Everyday she acts more and more like a toddler and big girl. The only bummer of the month is she's been running a fever on and off and de-sating a lot at night, since she has not other sickness symptoms it's a tad concerning to her Drs'.
For upcoming appointments she has an eye appointment tomorrow and a genetics appointment on Friday (weather permitting). Our other upcoming appointment is a week long trip to PA!
You might have seen this on facebook but I think it's good enough to repost!
I am so happy to say that Amber made it to the church yesterday and was able to be in the Sunday School Christmas Program! It was a really rough morning for her but she pulled through and didn't have any issues until we were ready to leave church!
She was so cute! We sat her in her Bumbo seat in front of the other children and it worked perfectly! The teachers sang "Gospel Bells" while the kids rang their bells. They were supposed to be singing too but it was hard enough to get them to ring the bells!
Amber was one of the first to be handed her bells and she started ringing them madly! When I stepped away from her and she saw all the people she got stage fright and stopped ringing them. Even when she saw me she wouldn't shake them again, just gave me a "deer in the headlight" look! Finally when she saw one of the leaders (who happens to be one of her great aunts) she started ringing them again, only after she stopped being enamored with her singing and ringing bells too.
I was so proud of her! She did so well, didn't have any issues and then sat quietly on my lap and watch the rest of the show! She really is a very good baby!
She was actually happy the rest of day too! Since she's been sick seeing her happy and herself is a rare thing. We took advantage of it and tried to get some cute Christmas photos!
This was another miracle of the day, that she actually sat in the rocker! Of course the non skid stuff under her butt and the fact that the rods in the back of the chair cradled her head helped a lot too. None the less she was so happy to sit in it and find out that she could rock it! I would just like to know where my little baby went! She is looking and acting so grown up these days.
Finally something that I know you wanted to see!
Ringing her bells!
I'm really hoping that I can get a copy of the program from someone who tapped it! A lot of Amber's family were unable to see her (including her daddy) and I know that they would love to see it!
Hope you all had a merry weekend! I've got quite a lot to do this week, someone very special is coming home very very soon!!
I'm sorry to be a Debbie Downer but it really just doesn't feel like Christmas here. My mom put a few more decorations up this morning but they just seem out of place. I'm not even sure why, maybe it's because we've been sick or the lack of family all around but things are just off this year.
Do you remember last year? All the bakingposts I had for you, my holiday favorite list, how crafty I was. I don't even have a million Dr appointments like last year for an excuse not be doing these things. Well, being sick is a good excuse to not bake but I could be wrapping presents, decorating or doing some holiday craft. I take it back, I am trying one craft but it's proving to need to much motivation to actually get it finished.
Part of my problem is the lack of snow. I mean come on this is New England! It seems like everyone else has had some snow and all we've had is a few really lame flurries. Freezing temperatures without snow is not fare people.
We also don't have a tree. Last year we had a tree the day after Thanksgiving, the year of the horrible ice storm that almost canceled Christmas we had a tiny tree in our little apartment well before Christmas. I'm not even sure where a tree will go with all of Amber stuff.
I guess my other problem is I feel like I should be really excited for Christmas this year. It will be Amber's first Christmas where she actually knows whats going on around her. Last year she slept through pretty much the whole day.
She's also supposed to be in the Sunday School Christmas thing this Sunday, she would be ringing bells with the other babies/toddlers. She loves ringing her bells and it would be great for her to be able to do something "normal" for once. The problem is she won't be doing it if she's still sick. I really want her to be able to because in the back of my mind there is always the awful thought of will she be with us next Christmas? I hate thinking that way but honestly Amber's diagnosis has made all the holidays and even daily events so bittersweet.
Sorry to be such a downer! This is a video of Amber when we brought all the decorations down around Thanksgiving. She was really excited to see them, she's not wearing glasses because she didn't want to.
In other news of whats going on around here:
My dad is finally state side!! Shouldn't be long now till we see him again!
The hubby and I are feeling better
My Grandpa is doing much better, in a nursing home for now getting rehab.
My Grandma is doing all right, still recovering but should be joining Grandpa soon.
Amber is still pretty sick. We took her to the Dr's yesterday. They said right now it's just a cold and there isn't anything they can do for her (other than what we've been doing). They also said they wouldn't be surprised if she got worse next week and if it turned into pneumonia, walking pneumonia or an ear infection. An ear infection isn't fun but it's something that we can deal with that doesn't worry us too much. Any thing else worries us, especially since even with this just being a cold she's in pretty rough shape. Thankfully right now her oxygen sats are good, her heart rate is a little high but manageable, she's still eating fairly well and having good output if you know what I mean. Please be praying that her fever stays low/manageable, that her congestion (which is the major problem) clears or lessens and that her cough goes away.
Wishing you all a great weekend! I've got the computer back that has most of my pictures on it so maybe I'll muster up a good wordless post!
The bad news Amber and I both have really nasty icky colds. I think it's been almost a year since I've been this sick. The worst is being sick at the same time as Amber.
The up side is my shoulder is feeling better....or at least I can't feel it over the all over body aches! Thankfully Amber hasn't been too too grumpy (like when she had the ear infection) and thankfully my wonderful cousin came over yesterday to entertain her!
The best thing is our suction machine came in right before Amber got sick, talk about perfect timing! I really don't know how we got along without it before. I'll admit it's is really freaky to do, I feel like I'm going to suck her brains out, but at least it cuts out the throwing up!
I was thinking our worst days of this cold was over but today seems to be the worst for both of us. The only thing to look forward to each day is daddy coming home from work to take care of us. He cuddled with Amber last night and then gave her a really great bath! Unfortunately she epically wet the bed and then threw up, so much for a good smelling baby. She did give us a really good nights rest which I'm very thankful for.
In other unhappy news both of my grandparents are in the hospital right now. Last Thursday my grandfather had a really bad fall, he seems to be recovering alright though. Yesterday my grandmother had heart surgery, she's still a little out of it today but also seems to be recovering alright.
You know what they say; laughter is the best medicine.
This is from around Halloween time, I love her little laugh!
I good news my dad should be home soon!
Friday, December 3, 2010
Do you know how hard it is to pick a video! It's much harder than trying to pick picture!
Today I think we'll go for the super chatty Amber one because (in my opinion) it's a pretty good depiction of how life around this house is right now. Full of baby chatter.
Other than a nurse visiting ever 28 days and her weekly Early Intervention visits Amber really doesn't have much going on. She has two visits this month, with a neurologist and her pediatrician but then she has off till March. I can hardly believe it myself!
With a lack of weekly appointments to cause schedule interruptions she's had a lot of free time to think about what she's doing with her life. And she's decided that she's going to spend every waking second telling us how she feels. She's also decided to work off some of her flab and build up some muscle. I have to say when this baby puts her mind to something she really can achieve quite a bit!
For muscle strength she is doing really well with supported sitting. She's well on her way to sitting on her own and I think she'd be closer if she wasn't so scared to fall over. Her muscle control is really come a long way, she can bend herself forward on purpose and pull herself back upright. I've already told you about the walker and jumperoo which is just amazing! We are so proud of everything that she is doing and trying to do, of course we're always proud of her no matter what she is or isn't doing!
She is also quite the conversationalist. It's much easier to show you in these videos than it is to try and figure out how to type baby speak. Because we're talking about it and because I love you all so much I'll try and see if blogger will let me add another video. Just so you can really see how talkative she it!
Isn't she a great mommy!
I love how she's making the baby bang on it's head, that's something that she does to herself all the time.
I hope you all enjoy the videos, I'm really sorry for my horrible grammar (can I still use the pain killer excuse?) and I hope you all have a wonderful weekend!
Thursday, December 2, 2010
Amber loves to play her little piano! She is getting to be so strong.
Not much is new around here. Amber is becoming a very busy little girl and loves to be sitting up or in her walker for most of the day. Yesterday she tried out her cousin's jumper toy and loved it! I wasn't expecting her to be able to jump but she did right away and went wild in it. I think we know what Santa is going to bring her this Christmas!
As for my neck of the woods; I'm still in a lot of pain. The Dr said it's definitely some muscle strain with a pinched nerve and a possible rotocuff (something like that) tare along with it. So today I get to see an orthopedist and possibly get an MRI.....wooohoo.
This just means you get to enjoy more videos of Amber!!
Last week was kind of a drag. After being advised by her cardiologist we've decided to not go ahead with heart surgery for Amber. It was a tough decision to make and I'm having a hard time with the fact that there is nothing we can do for her.
For good we got the ok to start giving her baby food again! She was kind of skeptical of it the first day but now she's loving it again. We'll also be changing up her feeding schedule again. In the next couple of weeks she'll be moving on to big girl formula during the day and pedialight at night. We've discovered that when she has pedialight at night she's much more active during the day and looks a lot better. With this new schedule she'll be getting more food by mouth and it will be a higher calorie so it will even out any extra calories burned by mouth eating.
The best news I have for you which totally makes up for such a crappy week last week is; Amber's therapist dropped off a baby walker on Friday! She tried it out on Friday and loved just being able to stand! The therapist told us it would probably take a while before she started moving in it. We didn't get a chance to put her in it all weekend but today we put her and guess what.....she walked across the kitchen floor! We were totally shocked! I could not be more proud of her!
Sorry it's sideways I was so excited I didn't even think that I wouldn't be able to flip it. Hopefully the tech guy can work his magic and fix it for me.
I could watch this over and over again! She went all the way back twice before she got really tired out but her face is priceless! She is so happy to be able to move around. Pretty soon she'll be all over the house.
It's been kind of a bitter sweet start to the year for us. Christmas was wonderful it was so nice to spend time with my family and have my dad and brother home. Here's Amber in her Christmas jammies giving her Christmas doll a hug! I'm not sure if she meant to do this or not. She did it a few times before she started eating the dolls arm :)
Good News: Amber is showing a lot of progress. She is using and opening her hands more, I even saw her open her thumb up to grab at a toy!! Her head control is way better. She is well on her way to supporting it herself! Her neurology appointment went really well. The Dr said that she had no reason to believe any of Amber's delays were brain related and she thinks the seizure like episodes she was having were due to bad acid reflux (sounds really weird but apparently that can affect the brain stem) She had her blood level re-tested (she's been off her meds for a month now) and the levels are normal! She'll have them tested again in February and we'll have more x-rays then too.
The Not So Great News: At her last appointment she was only 7 pounds :/ its not a great weight gain and I really thought she would be closer to 8 by now. Her 3 month well baby appointment is next week so hopefully she's gained more weight. My hope is that once she starts on solids she'll gain more and gain steadily.
She is becoming such a smiley girl and so talkative too! Here she is checking out her hands.
We spent a lot of last year preparing for this day but its not really something you can prepare for. Second time around and its still just as hard. We'll spend all of this year waiting for him to come home. At the same time we'll be missing my brother who deploys any day now. We did get to spend a lot of time with them before they left and had a lot of fun together.
It does seem like everyone is leaving. My grandparents, aunt and mom are all in Florida. Its very weird and quite here :/ at least I've still got my hubby here!! Well I'm not completely abandoned we still have family and friends helping out but there's nothing like a mother.
On A Lighter Note!! Are you wondering what happened to that to the gingerbread house?
It's hard to see but here's its fate:
It's being eaten! The fluffy culprit is Jada. She's not the only one Mr. Pickles has been helping eat it too. All the coconut snow is gone! Who would have thought cats would eat something like this!
Hope you all had a wonderful Christmas and a blessed New Year!
I'm done with Christmas shopping! Today I'm supposed to be wrapping presents, getting a Christmas card picture done and baking. Well that's not really happening because Amber was (emphasis on was) having a good morning and wanted to talk to and be played with. I ran upstairs for the Boppy and came back down to find this:
She was telling Jada some big story (they're very good friends)
Then she realized I was there and told me some big story (I talk back)
This is some of our conversations...please ignore my ridiculously high pitched voice.
I took the video on my phone (can you see the other cat in the background)
I was able to get some cute pictures for our car and some gifts before she started fussing and fell asleep again. I still need a few more pictures and I think I might post them tomorrow, they really are adorable! Well I'm off to make gingerbread pieces for house making tomorrow!! Wish me luck I've never done it from scratch before!!
BTW we have 4 cats...sometime I'll introduce you to them :)
