Wow - I'm several months behind on updates, but here we go:
Weight: 26 pounds!
Height: 33 inches and growing! ** Fun fact - she's now on the growth chart for all 3 measurements for the very first time - height (5th), weight (10th) and head circumference (3rd)!
General Health: We had a really healthy fall! We made it through all of the big, fun holidays before getting sick. ..but after Christmas she got strep, had her second seizure, and has been fighting off this bug for over a month now. I guess we don't get sick terribly often (since we don't go anywhere. ..read, sad face), but when we do, we stay sick for a while. Her immune system just has a hard time, and she also seems to be a magnet for antibiotic resistant bugs, neither of which help our cause. I swear if I didn't *ahem* highlight my hair from time to time, I would have a whole new patch of gray just from this sickness alone. Keeping a rash and a low grade temp for 2 - 3 weeks while being on seizure alert will remove years off of a mama's life in a hurry. Anyway, as nerve wracking as it has been, Philip and I are thankful that she really hasn't felt terrible besides that first week, and that we haven't gotten whatever she's had. It would be infinitely harder to do what we do on a daily basis, especially with her sick, if one of us gets sick. So, at the end of the day, we have so much to be thankful for!
General Health: We had a really healthy fall! We made it through all of the big, fun holidays before getting sick. ..but after Christmas she got strep, had her second seizure, and has been fighting off this bug for over a month now. I guess we don't get sick terribly often (since we don't go anywhere. ..read, sad face), but when we do, we stay sick for a while. Her immune system just has a hard time, and she also seems to be a magnet for antibiotic resistant bugs, neither of which help our cause. I swear if I didn't *ahem* highlight my hair from time to time, I would have a whole new patch of gray just from this sickness alone. Keeping a rash and a low grade temp for 2 - 3 weeks while being on seizure alert will remove years off of a mama's life in a hurry. Anyway, as nerve wracking as it has been, Philip and I are thankful that she really hasn't felt terrible besides that first week, and that we haven't gotten whatever she's had. It would be infinitely harder to do what we do on a daily basis, especially with her sick, if one of us gets sick. So, at the end of the day, we have so much to be thankful for!
PT/OT: We've gone through another stretch with limited PT / OT visits - they've been sick, we've been sick, there were the holidays and they both went to Europe for two weeks. ..so, Addie has regressed in her tolerance of her therapists (read - she starts crying as soon as her PT walks in the door. ..). The good news is, I don't feel like it's hurt her very much! She's walking better and better, managing the stairs a little better each week (still with LOTS of help and hands on her to make sure she doesn't fall. ..), and she's almost running! She actually sort of runs now when our neighbor Ben comes to walk Prince during the week - "BeNNN!!!!!" She is a little obsessed with him ...but he's an adorably kind, gentle soul wrapped up in a suddenly very tall 13 year old body, so we can't blame her. It's a race to see who gets to the door first when he knocks - Addie or Prince! Prince currently wins, but one day she's going to beat him, I just know it! We absolutely appreciate what her therapists have helped us accomplish over the last 2 years, but currently, I think Prince is her best PT - she has walked so, so much more since he joined our family!
With her walking more, she does fall more, and that has also shaved a few years off of my and Philip's lives. Since she's a little more stiff than most kiddos, when she falls, she doesn't crumple, she kind of flops down, and if she doesn't land just right, she goes from plopping on her booty to flopping on back over and her head cracks the floor. ..which no parent likes to hear, but considering her history of brain injury. .we want to preserve all of those little brain cells we can, not to mention her shunt! All in all we're incredibly happy with and proud of everything she's doing.
Speech: Addie's vocabulary has literally exploded since I last posted! She can mimic about any word or phrase you say, and her ability to recall and use words she knows appropriately has grown exponentially. She's truly gone from a few dozen words to over 100+. I love hearing her chatter to herself or as she's playing, or randomly popping out with 2 and 3 word phrases when she's trying to tell us something or ask for something she wants. If you're not around her a lot, it's hard to understand "Addie-speak" - let's be honest, sometimes it's hard even if you ARE around her all the time - but I love that she has a pretty extensive vocabulary now! She's using bigger words - "flamingo", "alligator", "walrus" and can also identify those crazy animals when she sees them! Her comprehension is really, really good - so much so that on her recent Early Intervention Annual Eval, she scored. ..AGE APPROPRIATE in the receptive speech / cognition area. Age appropriate people. .. REAL AGE appropriate - and beyond, as in 32-36 months at 32 months old. Talk about happy mama tears. .. Her ability to use and recall words and put them into 2, 3, and 4 word phrases is still delayed, but it's catching up at 28 -32 months! I'm so incredibly proud of her. That's all HUGE. Period. Add in that she's hearing impaired on top of her premature birth, and that's just. . .an absolute testament to what God can do and the brilliance of this little girl. Together, they make an incredible team!
We have had to reschedule her latest hearing screening a couple of times due to her extended illness, so I don't have an update in that department, but please continue to pray that God will touch that right ear and not only stop the loss from progressing but actually show us that it's not as bad as we thought. This year, I'm making a point to ask God for bigger things. I know He can do it, and I'm going to do a better job of asking for them.
She's making progress in the eating department! She's decided she likes chicken noodle soup, chips, and a few other things, but most notably she is obsessed with butter and ice chips. ..I mean, what's not to love, I guess?! Her ability to eat has improved tremendously, but we're starting to see more of a behavioral pattern to it. She won't eat, won't eat, won't eat, but if I offer her ice chips or some butter in exchange for a bite of noodle or carrot, she easily takes a bite, chews it up, and swallows it. It's still more work for her than for you and I, but the skills are there! She just needs to practice. ..so we're working on ways to motivate her these days. For now, we offer what she wants (butter, ice cream, a video on our phones) in exchange for 2 - 3 bites and swallows (we have to be specific - she's a huge fan of chewing up and spitting out). All in all, we are so incredibly proud and impressed!!
Eyes: Eye surgery was a success! Her eyes look much, much better now. They still tend to wander, especially if she is tired or sick, but not nearly to the degree that they did. We're supposed to be patching 2 hours / day now, more as a precaution than as a true necessity. We were definitely sad to have to reintroduce patching after just one month off post-op, but two hours is so much better than eight that I can't complain (much).
Hearing Aids: Our child is brilliant. She walked up to me today holding her right hearing aid in her hand and had a worried look on her face. She held it up to me and said "He'ing aid. .. battery". "He'p, Mama". Sure enough, the battery on her aid had died, and she wanted me to replace it! Seriously. ..I couldn't keep these aids on her 6 months ago. ..and now she asks for the batteries to be replaced?! And she used words to ask for help. .. not grunts and motions, but words! Words that conveyed what she needed! In a phrase! Two phrases! HUGE people. ..just huge.
This month Addie loves: So much has changed since the last update. .. she's still obsessed with stickers and Crayons, but she has also moved on to markers! She still loves to greet Philip when he gets home, but now it's Addie and Prince greeting him at the door - pretty precious! Now she loves to lead you through the house at a fast walk / run instead of just meandering like before. She loves to help with laundry, and she insists on pushing her laundry basket to and from her room herself - "Over d'er, Mama" - to tell me to stay away and not help. LOVE. She also loves to help feed Prince by carrying his food to his bowl in the morning and at night, helps with his water, and wants to give him all of his treats during the day. She (finally) enjoys being read to, so now we read at least 4 books before bed (still the same ones, but it's a start) and say our prayers. She can start the prayers - "Dear God", tells us who all to pray for (usually my parents dogs), and says "Amen" when we're done. It's precious. Absolutely precious. She loves the stuffed Snoopy friends got her for Christmas and a stuffed Mickey and Minnie Mouse that her grandparents bought her last week. Speaking of Mickey - she is obsessed with the Hot Dog dance on Mickey Mouse Clubhouse! We watch an episode once (if we're lucky) and then watch the Hot Dog dance at least 3 times. I look at it as a good therapy activity - dancing is a great way to loosen up stiff joints, right?! Bath time is increasingly popular, and she loves playing with a red truck that friends sent her. She doesn't roll it around the house, she puts it on the third or fourth step of our stairs and sends it crashing down - "Had a wreck, Mama!" She loves music and songs. Finally, she is still and will forever be in love with Prince.
This Month Addie DOESN'T love:
PT / OT. .. it's just a disaster right now. I'm sure it will get better. .. Being told "no" or "stop". Going to bed at night - she's started trying to distract, ask for more books, to brush her teeth, etc. Some nights it's a little exhausting, but more often than not I just smile and chuckle because it's so typical for this age. ..and we relish anything considered "typical" around here. Her parents talking on the phone.. .that hasn't changed or gotten any better.
With her walking more, she does fall more, and that has also shaved a few years off of my and Philip's lives. Since she's a little more stiff than most kiddos, when she falls, she doesn't crumple, she kind of flops down, and if she doesn't land just right, she goes from plopping on her booty to flopping on back over and her head cracks the floor. ..which no parent likes to hear, but considering her history of brain injury. .we want to preserve all of those little brain cells we can, not to mention her shunt! All in all we're incredibly happy with and proud of everything she's doing.
Speech: Addie's vocabulary has literally exploded since I last posted! She can mimic about any word or phrase you say, and her ability to recall and use words she knows appropriately has grown exponentially. She's truly gone from a few dozen words to over 100+. I love hearing her chatter to herself or as she's playing, or randomly popping out with 2 and 3 word phrases when she's trying to tell us something or ask for something she wants. If you're not around her a lot, it's hard to understand "Addie-speak" - let's be honest, sometimes it's hard even if you ARE around her all the time - but I love that she has a pretty extensive vocabulary now! She's using bigger words - "flamingo", "alligator", "walrus" and can also identify those crazy animals when she sees them! Her comprehension is really, really good - so much so that on her recent Early Intervention Annual Eval, she scored. ..AGE APPROPRIATE in the receptive speech / cognition area. Age appropriate people. .. REAL AGE appropriate - and beyond, as in 32-36 months at 32 months old. Talk about happy mama tears. .. Her ability to use and recall words and put them into 2, 3, and 4 word phrases is still delayed, but it's catching up at 28 -32 months! I'm so incredibly proud of her. That's all HUGE. Period. Add in that she's hearing impaired on top of her premature birth, and that's just. . .an absolute testament to what God can do and the brilliance of this little girl. Together, they make an incredible team!
We have had to reschedule her latest hearing screening a couple of times due to her extended illness, so I don't have an update in that department, but please continue to pray that God will touch that right ear and not only stop the loss from progressing but actually show us that it's not as bad as we thought. This year, I'm making a point to ask God for bigger things. I know He can do it, and I'm going to do a better job of asking for them.
She's making progress in the eating department! She's decided she likes chicken noodle soup, chips, and a few other things, but most notably she is obsessed with butter and ice chips. ..I mean, what's not to love, I guess?! Her ability to eat has improved tremendously, but we're starting to see more of a behavioral pattern to it. She won't eat, won't eat, won't eat, but if I offer her ice chips or some butter in exchange for a bite of noodle or carrot, she easily takes a bite, chews it up, and swallows it. It's still more work for her than for you and I, but the skills are there! She just needs to practice. ..so we're working on ways to motivate her these days. For now, we offer what she wants (butter, ice cream, a video on our phones) in exchange for 2 - 3 bites and swallows (we have to be specific - she's a huge fan of chewing up and spitting out). All in all, we are so incredibly proud and impressed!!
Eyes: Eye surgery was a success! Her eyes look much, much better now. They still tend to wander, especially if she is tired or sick, but not nearly to the degree that they did. We're supposed to be patching 2 hours / day now, more as a precaution than as a true necessity. We were definitely sad to have to reintroduce patching after just one month off post-op, but two hours is so much better than eight that I can't complain (much).
Hearing Aids: Our child is brilliant. She walked up to me today holding her right hearing aid in her hand and had a worried look on her face. She held it up to me and said "He'ing aid. .. battery". "He'p, Mama". Sure enough, the battery on her aid had died, and she wanted me to replace it! Seriously. ..I couldn't keep these aids on her 6 months ago. ..and now she asks for the batteries to be replaced?! And she used words to ask for help. .. not grunts and motions, but words! Words that conveyed what she needed! In a phrase! Two phrases! HUGE people. ..just huge.
This month Addie loves: So much has changed since the last update. .. she's still obsessed with stickers and Crayons, but she has also moved on to markers! She still loves to greet Philip when he gets home, but now it's Addie and Prince greeting him at the door - pretty precious! Now she loves to lead you through the house at a fast walk / run instead of just meandering like before. She loves to help with laundry, and she insists on pushing her laundry basket to and from her room herself - "Over d'er, Mama" - to tell me to stay away and not help. LOVE. She also loves to help feed Prince by carrying his food to his bowl in the morning and at night, helps with his water, and wants to give him all of his treats during the day. She (finally) enjoys being read to, so now we read at least 4 books before bed (still the same ones, but it's a start) and say our prayers. She can start the prayers - "Dear God", tells us who all to pray for (usually my parents dogs), and says "Amen" when we're done. It's precious. Absolutely precious. She loves the stuffed Snoopy friends got her for Christmas and a stuffed Mickey and Minnie Mouse that her grandparents bought her last week. Speaking of Mickey - she is obsessed with the Hot Dog dance on Mickey Mouse Clubhouse! We watch an episode once (if we're lucky) and then watch the Hot Dog dance at least 3 times. I look at it as a good therapy activity - dancing is a great way to loosen up stiff joints, right?! Bath time is increasingly popular, and she loves playing with a red truck that friends sent her. She doesn't roll it around the house, she puts it on the third or fourth step of our stairs and sends it crashing down - "Had a wreck, Mama!" She loves music and songs. Finally, she is still and will forever be in love with Prince.
This Month Addie DOESN'T love:
PT / OT. .. it's just a disaster right now. I'm sure it will get better. .. Being told "no" or "stop". Going to bed at night - she's started trying to distract, ask for more books, to brush her teeth, etc. Some nights it's a little exhausting, but more often than not I just smile and chuckle because it's so typical for this age. ..and we relish anything considered "typical" around here. Her parents talking on the phone.. .that hasn't changed or gotten any better.
- That Addie can / will / has finally kicked this bug she's had.
- For Addie's hearing to not get any worse and that it will even test better in the future.
- Wisdom as we look at transitioning PT / OT when she turns three and for the therapists that we will begin to see, whoever they are, that they would be just what our girl needs at this point in her life.
- Wisdom and courage as we start to look at our transition out of TEIS (for children birth to three) and into the school system as far as resources for therapies and special education services to help her reach her full potential.
Playing with her truck!
She loves sitting in her pink big girl chair!
Santa's elves (aka, Grandad Austin) made this great art table for her,and it's been a huge hit!
Sweet girl didn't feel well much of January.
That's a stick of butter. ..of course it is!
We love Snoopy!
They lurve each other. ..
Sitting on Prince's lap. ..one of her favorite activities. .. NOT one of his favorite activities.. .
Welcome home, Philip / Dad!!
That hair. ..seriously?!
Arts and crafts time. ..Prince thought it was snack time.
Family road trip to Walgreens for (another) prescription!
It's a work in progress. ..
So much love.. .
How many animals can one little girl hold?!
Story time. ..she's such a good little mama.. .
Watching MMC with Violet. ..it's taken 2.5 years, but she's finally into "tummy time"!My heart smiles every single time I see her on her belly.
She can dress these sticker paper dolls!! Take that fine motor skills delay. ..
Oh my gosh, Rachel! This is so amazing to read!!!!!! There is so much I want to comment on, but my brain is basically echoing "Walrus." haha. I cannot believe she knows what a walrus is! I am pretty sure Lily doesn't even know walrus.
ReplyDeleteAlso the part about the hearing aid!!!!! That is HUGE. I cannot even believe how far she has come. You are amazing. AMAZING.I can't even begin to imagine how exhausting and constant your life is. Constant. I bet it feels amazing to see your hard work paying off. :)
How wonderful. I loved all of the pictures!!!