We had our first "work" session with the new physical therapist today and grandpa got to come with us because it was after work. It was awesome!!! Madilyn played with the baby in the giant mirror and even gave her kisses, it was so cute to watch. She spent some time on the big swing with Monica and then got to play on it with me. While on the swing it works on her muscles used for sitting. I sat her on her butt in front of me with toys and went back and forth and side to side while barely holding her at her hips so she straightens herself out. She did great!! We then tried to move her on her belly over my leg but she's not receptive at all to tummy time so she then went on grandpa's chest on the big wedge where she feels a little safer and we can gradually work our way to laying flat. The swing was really fun...I told the hubby I want one to play on at home, to bad it would have to replace our couch..
Milwaukee's goal for Madilyn is to have her sitting for a few seconds unaided by the September 6th appointment, I told Monica today that my goal for that was June. She thought it was reasonable and said "then let's get working". This made my day as sometimes our goals seem pretty lofty and unrealistic but if we don't shoot for the moon who will?
Madilyn has been making really quick progress with sitting on the couch unaided and we were able to play with the light board for almost 20 minutes last night with only repositioning her a few times. The way I feel when I watch her accomplishing these tasks is absolutely overwhelming and beyond words. It is so exciting, like nothing I have ever experienced in my life.
Home Nursing came today for her weight check too and said they were expecting a plateau after the huge gains she's had the past few weeks but no plateau for the Peanugga........she gained 5 1/2 ounces so she's 13 pounds 6 ounces now!!!! Hopefully the plateau won't come until we're over 14 pounds, I want to jump this hurdle as quickly as possible and with the new tricks we're using from Liz (speech/feeding therapist) I don't think that's unrealistic.
All in all today was an awesome day........can't wait to work with the therapist again on Monday.
Friday, March 15, 2013
Wednesday, March 13, 2013
Sitting & and eating
She's sitting!!!!! Months of hard work are paying off and she's sitting!! WOOHOO!! Only for about 20 seconds and then she doesn't even fall over......she has discovered she can use her feet and scoot forward on her butt and end up on her back......I'm very excited that she's sitting and she's very excited that she already figured out how to wiggle her way out of it.......either way it's progress.
Madilyn also had her evaluation with the speech/feeding therapist today and we're nowhere near as behind as we originally thought. She gave us a bunch of ideas to help move the gag reflex back and simpler foods for learning to eat. I always started my older kids with cheerios and the therapist actually told us to use fruit loops. Fruit loops dissolve much quicker so there is no chance of a child choking on them. We also went to the Co-op in Hancock and purchased dried papaya and mango strips, she said they work awesome for teething and getting them to explore with food. I can put them right in the playpen or with her toys and she'll put them in her mouth and lick them just like her toys and there's no mess. The other trick we learned was Red Vines licorice..........she told us to take a few pieces out and let them get stale then Madilyn can teethe/chew on them and not get any chunks off that will risk choking but she is getting all the texture and flavor. We learned some new games with the eating too so it gets Madilyn to open her mouth easier and we tried them at dinner tonight and it was amazing.............first meal ever that she did not gag and throw up twice before keeping any food down!!!!!!!!! I absolutely love all the things I learn from her therapists, quite a few of them (especially the eating ones) I wish I knew when my children were smaller.
Tomorrow we have the BHK home visitor and then Friday we have PT with Monica (the new therapist) and Home Nursing for the weekly weight check. I'm going to check with the ones who work with her to see if they mind if I post some pictures of them working with Madilyn............fingers crossed that we'll have pictures posted soon and another awesome weight gain this week.
Monday, March 11, 2013
Cribs and CPR
Sorry I haven't posted in a few days. We had a crazy busy weekend between me working and family stuff going on. Saturday I worked and then took the Peanugga to spend some time with dad before he went back to college and Sunday I worked and then Peanugga went to Auntie Tammy's (my sister's) for a visit while we accomplished major tasks around the house. We had to move all three bedrooms so that my hubby, the peanugga and I are now in the biggest bedroom so she gets to sleep in her crib every night now instead of the playpen. She loves it!!! I did have to use bumper pads on the back of it even though they tell you not to because the Peanugga decided that the crib bars made awesome teething toys and kept sticking her arm through it and couldn't get out......It was amusing but I quickly realized there would be no sleeping so it's covered. The Peanugga was not happy about me covering it either, when I was trying to tie it she was playing in the crib and kept pulling it off and yelling at me. Mission accomplished though, it's covered and she sleeps great.
Today we had a friend's 2 year old, Bentley, here for the morning while Mommy was working and Madilyn loved it. Bentley absolutely loves her and it's nice to have another little one around. I'm hoping it motivates her now that she can see so much better and she'll want to mimic him... Her progress already since getting the glasses is huge....she sees everything now and it's fun to watch her. When she's on the floor she is starting to go after her toys now and has turned into a scooter which makes the therapists cringe. She tucks her arms behind her back, gets her little butt off the floor and uses her legs to push herself around. I think it's funny, the therapists don't. Although the new therapist said we would find a way to work with it but it's not conducive to crawling, but neither is refusing to do tummy time either. When we try to put Madilyn on her tummy she puts her arms out, locks up her legs, cranks her head around to look at you and has the hugest temper tantrum ever.........she gets downright angry and as soon as you let go of her she flips herself over and lets you know how unhappy she is with you. It usually ends with her spitting at me and pouting. She sure is stubborn.
I went tonight and got my CPR certification. I haven't taken a CPR course in over 20 years so it was nice to go especially now that Madilyn is eating more foods, it makes me feel a little safer. I highly recommend to everyone to take a CPR course, you never know when you could save someones life. I questioned the woman teaching the course about what to do if Madilyn was choking because a child (infant) her size gets tipped head down and we cannot do that with Madilyn because of the shunt. She told me to try it with her more level but if that didn't work then she would have to be tipped and hopefully it works quickly or it can cause problems with her shunt. There were some local daycare providers at the class renewing their certifications and when we started talking about Madilyn they thanked me for not attempting to put a child like her into daycare and putting that responsibility on them.........I reassured them that it has never been nor will it ever be an option for us as she requires too much care.
The sitting is going really well. Peanugga no longer fights it as much as she did now that she can see so much more. She will actually sit with us for extended periods of time. She loves her little music/light up piano and the light up bongo drums......I'm telling you all that my cutie little pistol is going to be a rock star someday with how much she loves music.....
Today we had a friend's 2 year old, Bentley, here for the morning while Mommy was working and Madilyn loved it. Bentley absolutely loves her and it's nice to have another little one around. I'm hoping it motivates her now that she can see so much better and she'll want to mimic him... Her progress already since getting the glasses is huge....she sees everything now and it's fun to watch her. When she's on the floor she is starting to go after her toys now and has turned into a scooter which makes the therapists cringe. She tucks her arms behind her back, gets her little butt off the floor and uses her legs to push herself around. I think it's funny, the therapists don't. Although the new therapist said we would find a way to work with it but it's not conducive to crawling, but neither is refusing to do tummy time either. When we try to put Madilyn on her tummy she puts her arms out, locks up her legs, cranks her head around to look at you and has the hugest temper tantrum ever.........she gets downright angry and as soon as you let go of her she flips herself over and lets you know how unhappy she is with you. It usually ends with her spitting at me and pouting. She sure is stubborn.
I went tonight and got my CPR certification. I haven't taken a CPR course in over 20 years so it was nice to go especially now that Madilyn is eating more foods, it makes me feel a little safer. I highly recommend to everyone to take a CPR course, you never know when you could save someones life. I questioned the woman teaching the course about what to do if Madilyn was choking because a child (infant) her size gets tipped head down and we cannot do that with Madilyn because of the shunt. She told me to try it with her more level but if that didn't work then she would have to be tipped and hopefully it works quickly or it can cause problems with her shunt. There were some local daycare providers at the class renewing their certifications and when we started talking about Madilyn they thanked me for not attempting to put a child like her into daycare and putting that responsibility on them.........I reassured them that it has never been nor will it ever be an option for us as she requires too much care.
The sitting is going really well. Peanugga no longer fights it as much as she did now that she can see so much more. She will actually sit with us for extended periods of time. She loves her little music/light up piano and the light up bongo drums......I'm telling you all that my cutie little pistol is going to be a rock star someday with how much she loves music.....
Friday, March 8, 2013
Holy Therapists....
So you will never again hear me complain about not getting out of the house or lack of adult conversation. Madilyn already has a physical therapist that comes to our house every other Friday to work with her, and a Visual Impairment Specialist that comes into our home and a home visitor from BHK that works with her weekly and Home Nursing comes weekly for weight checks which get called in to her GI doctor, and now it's time to add more therapists.
Madilyn's regular therapist and the VI were here early this afternoon and then we went to a new therapist to be evaluated. She loved Madilyn and will be working with her once per week at her center and we are adding speech/feeding therapy once per week at the same center. Once Madilyn makes some more progress than another therapist at the hospital will be added for Occupational therapy. The speech/feeding therapist told me to "plan on getting messy"...haha....as long as it gets the Peanugga to not be so texture sensitive and taking things better orally we'll get messy...
We got lucky with the speech/feeding therapist because other than her evaluation next week will have the same day/time appointment every week. It's not working out quite that easily with the new PT, hopefully in time it'll be a permanent appointment and not quite so much juggling. I'm not looking forward to all the running but I am extremely excited about the additional therapy and can't wait to see the progress the Peanugga makes now and in the months/years to come.
Her glasses are already making a huge difference with the sitting time and the toy interaction. It used to be a huge challenge to get her to sit at all and now she'll sit for several minutes at a time with some help. Next step is to get her sitting on her own......they say for seconds 6 months from now....I say for minutes by then, we'll see who wins that one...
We also became Nana and Papa for speech therapy purposes rather than grandma/grandpa. She does occasionally say grandpa but the natural speech progression suggests Nana and Papa first.....so Nana and Papa it is.
We have a very busy weekend coming up..I work both mornings and then Saturday afternoon I am taking her to visit with her dad again before he heads back to college. We also have continual therapy to do, it's ok cause most of it's just fun and when it isn't, we sing..........quite horribly, but we sing.
Madilyn's regular therapist and the VI were here early this afternoon and then we went to a new therapist to be evaluated. She loved Madilyn and will be working with her once per week at her center and we are adding speech/feeding therapy once per week at the same center. Once Madilyn makes some more progress than another therapist at the hospital will be added for Occupational therapy. The speech/feeding therapist told me to "plan on getting messy"...haha....as long as it gets the Peanugga to not be so texture sensitive and taking things better orally we'll get messy...
We got lucky with the speech/feeding therapist because other than her evaluation next week will have the same day/time appointment every week. It's not working out quite that easily with the new PT, hopefully in time it'll be a permanent appointment and not quite so much juggling. I'm not looking forward to all the running but I am extremely excited about the additional therapy and can't wait to see the progress the Peanugga makes now and in the months/years to come.
Her glasses are already making a huge difference with the sitting time and the toy interaction. It used to be a huge challenge to get her to sit at all and now she'll sit for several minutes at a time with some help. Next step is to get her sitting on her own......they say for seconds 6 months from now....I say for minutes by then, we'll see who wins that one...
We also became Nana and Papa for speech therapy purposes rather than grandma/grandpa. She does occasionally say grandpa but the natural speech progression suggests Nana and Papa first.....so Nana and Papa it is.
We have a very busy weekend coming up..I work both mornings and then Saturday afternoon I am taking her to visit with her dad again before he heads back to college. We also have continual therapy to do, it's ok cause most of it's just fun and when it isn't, we sing..........quite horribly, but we sing.
Wednesday, March 6, 2013
Peanugga's new glasses!!!
So my sweet Peanugga had an awesome day.......her new glasses came in and it's awesome to see her in them. They obviously opened up her range of vision and she can't stop watching absolutely everything and smiling.......oh the smiling, it just melts my heart to watch it. It's absolutely amazing.
She also turned 17 months old today and finally broke the 13lb barrier. When Home Nursing came to do her weight today she was 13lbs 1/2 ounce!!!! WOOHOO!!!! Lots of cause for celebration in our house today. She has her BHK home visitor coming tomorrow and we meet with the new physical therapist and her regular therapist on Friday. Very busy week for us but I cannot wait to see how much the glasses help her progress.
Big excitement on the feeding front too....her night feeds are completely back to normal and she kept down two 80ml feeds this afternoon!! It's been well over a month since we've been able to keep down an 80ml feed. It opens up a ton of time for therapy/play when we get to do feedings every 3 hours instead of every hour. She also ate two teaspoons full of mixed fruit yesterday......she used to eat that in an entire day and yesterday we did it in one sitting...and we bought her some teething cookies and graduates goodies for the booster seat therapy in hopes that she will get them to her mouth like she does her toys and eat them. I'm really hopeful that once she realizes she can feed herself the eating may really take off.
The bedtime thing is working out awesome too....by 9:30 she lets you know it's bedtime and we're all really liking the new routine. It's all baby steps but it's all progress and any progress is celebrated in our house. Madilyn has taught me to really step back and enjoy the small things in life. Nothing is insignificant to me anymore......every smile, every giggle, wiggle or mimicked noise is cause to celebrate. If she can be as happy as she is all the time then I think everyone should be.
She also turned 17 months old today and finally broke the 13lb barrier. When Home Nursing came to do her weight today she was 13lbs 1/2 ounce!!!! WOOHOO!!!! Lots of cause for celebration in our house today. She has her BHK home visitor coming tomorrow and we meet with the new physical therapist and her regular therapist on Friday. Very busy week for us but I cannot wait to see how much the glasses help her progress.
Big excitement on the feeding front too....her night feeds are completely back to normal and she kept down two 80ml feeds this afternoon!! It's been well over a month since we've been able to keep down an 80ml feed. It opens up a ton of time for therapy/play when we get to do feedings every 3 hours instead of every hour. She also ate two teaspoons full of mixed fruit yesterday......she used to eat that in an entire day and yesterday we did it in one sitting...and we bought her some teething cookies and graduates goodies for the booster seat therapy in hopes that she will get them to her mouth like she does her toys and eat them. I'm really hopeful that once she realizes she can feed herself the eating may really take off.
The bedtime thing is working out awesome too....by 9:30 she lets you know it's bedtime and we're all really liking the new routine. It's all baby steps but it's all progress and any progress is celebrated in our house. Madilyn has taught me to really step back and enjoy the small things in life. Nothing is insignificant to me anymore......every smile, every giggle, wiggle or mimicked noise is cause to celebrate. If she can be as happy as she is all the time then I think everyone should be.
Monday, March 4, 2013
Bed time changes & visiting
So this grandma got very brave last night and made bedtime changes. Madilyn normally sleeps on the couch in her boppy pillow for about 2 hours before we head up to bed. I have tons of paranoia about putting her upstairs even with the monitor. Well last night I got brave and put her in her bed shortly after 9 and used the monitor. This is a huge step for me. Of course everything was just fine and she slept like a little angel and I took the time to just relax and hang out with my hubby and of course not take my eyes off the video monitor so I could see every little move she made. Progress.......it's all progress.
We are hoping for a call that the glasses are in......they said up to 2 weeks and Thursday will be 2 weeks. I am very excited and anxious to see the changes that the glasses will make for Madilyn. I want her world to be as open as possible.
We made it about 15 minutes yesterday sitting in her booster seat playing with the cheerios. Her hand/eye coordination is improving really quick. The therapist told us she thought it would take 6 months or more before she attempted to put the cheerio in her mouth by herself and she did it yesterday. She put it to her mouth, licked it and gave me the biggest smile ever. HOORAY for frosted little treats!!!! She also loves sitting and playing with her new little lights/sounds piano so I ordered the Fisher Price bongo drums that the BHK Home visitor brought on Thursday. I swear Madilyn is going to be a drummer in a rock band when she grows up......she gets so excited when she can pound on something it's very comical to watch and brings me great joy.
For the first time in well over a month we are going visiting this afternoon. Madilyn's dad is home from college and we are heading over to his grandmother's house so they can spend some time with her. She loves her other grandma and gg (great grandparents) so I am sure she will be excited to visit. She used to go there for regular visits but the dreaded virus really set us back with feedings, coughing and sniffling. We are finally on the tail end of it and her feedings are almost back to normal now so it's time to let her spend time with the other side of her family too. With Madilyn being so tiny I am extremely cautious about what I expose her to. She gets sick very easily and it takes a very long time to overcome the setbacks that being sick causes. It messes up feedings and therapy and can take away the five steps we've made forward and turn it into ten steps backwards in the blink of an eye. While we need to protect her as much as possible we can't live in a bubble either and sometimes it's very difficult to figure out the balance........it's a constant work in progress with a million variables to consider.
The Peanugga princess just woke from her morning nap so we are going to take a bath now (she loves her baths) and get our therapy time done so we can enjoy our visit this afternoon........and hopefully next time I post I'll have pictures of her in new glasses.....
We are hoping for a call that the glasses are in......they said up to 2 weeks and Thursday will be 2 weeks. I am very excited and anxious to see the changes that the glasses will make for Madilyn. I want her world to be as open as possible.
We made it about 15 minutes yesterday sitting in her booster seat playing with the cheerios. Her hand/eye coordination is improving really quick. The therapist told us she thought it would take 6 months or more before she attempted to put the cheerio in her mouth by herself and she did it yesterday. She put it to her mouth, licked it and gave me the biggest smile ever. HOORAY for frosted little treats!!!! She also loves sitting and playing with her new little lights/sounds piano so I ordered the Fisher Price bongo drums that the BHK Home visitor brought on Thursday. I swear Madilyn is going to be a drummer in a rock band when she grows up......she gets so excited when she can pound on something it's very comical to watch and brings me great joy.
For the first time in well over a month we are going visiting this afternoon. Madilyn's dad is home from college and we are heading over to his grandmother's house so they can spend some time with her. She loves her other grandma and gg (great grandparents) so I am sure she will be excited to visit. She used to go there for regular visits but the dreaded virus really set us back with feedings, coughing and sniffling. We are finally on the tail end of it and her feedings are almost back to normal now so it's time to let her spend time with the other side of her family too. With Madilyn being so tiny I am extremely cautious about what I expose her to. She gets sick very easily and it takes a very long time to overcome the setbacks that being sick causes. It messes up feedings and therapy and can take away the five steps we've made forward and turn it into ten steps backwards in the blink of an eye. While we need to protect her as much as possible we can't live in a bubble either and sometimes it's very difficult to figure out the balance........it's a constant work in progress with a million variables to consider.
The Peanugga princess just woke from her morning nap so we are going to take a bath now (she loves her baths) and get our therapy time done so we can enjoy our visit this afternoon........and hopefully next time I post I'll have pictures of her in new glasses.....
Saturday, March 2, 2013
Noisy sleepers & glasses
So we had a busy day yesterday running errands and the Peanugga Princess and I got to have a much needed lunch date with my hubby. The princess got a new lights/music piano that teaches all kinds of stuff including Spanish.......a little more inspiration for her to sit on her butt and play with it......it sounds better than my singing (even though I secretly think she prefers my horrible singing..:). Once we got home it was off to work I went and time for grandpa/Madilyn time. I think they both really look forward to this, especially Madilyn because grandpa sings way better than me and he plays guitar for her.
We were in bed last night and Madilyn is sleeping and I obviously was trying to but she is soooooo LOUD...she's contentedly sleeping and all of a sudden she'll let out the biggest yell and then obnoxious farts and a few minutes later it's a repeat yell and then a burp...puts me into an absolute fit of giggles to which I find it even funnier because my hubby and the Peanugga are both sound asleep. I'm absolutely amazed at how much atrocious noise can come out of such a precious little being. Then she'll just let out a big sigh of relief and go back to sleep....... and I'm wide awake........giggling......
We have our fingers crossed that early this week the phone call will come that Madilyn's glasses are in. I'm so impatient....it's only been a little over a week and I feel like we've been waiting forever for them. I can't wait to see the changes when she is able to see more than a few inches from her face......it will open up a whole new world for her to experience.
I guess I should explain the nickname too.......Madilyn was too big to be a pea and to little to be a nugget when she was born so I came up with Peanugga. My other children felt the need to explain to me that Peanugga isn't even a word but I explained right back that it's not a word.....she's a very real person and she's my Peanugga...:) Speaking of Peanugga's I worked all morning and she's been napping and the sun is out and beautiful and she's waking up now so we're heading out to enjoy some sunshine....
We were in bed last night and Madilyn is sleeping and I obviously was trying to but she is soooooo LOUD...she's contentedly sleeping and all of a sudden she'll let out the biggest yell and then obnoxious farts and a few minutes later it's a repeat yell and then a burp...puts me into an absolute fit of giggles to which I find it even funnier because my hubby and the Peanugga are both sound asleep. I'm absolutely amazed at how much atrocious noise can come out of such a precious little being. Then she'll just let out a big sigh of relief and go back to sleep....... and I'm wide awake........giggling......
We have our fingers crossed that early this week the phone call will come that Madilyn's glasses are in. I'm so impatient....it's only been a little over a week and I feel like we've been waiting forever for them. I can't wait to see the changes when she is able to see more than a few inches from her face......it will open up a whole new world for her to experience.
I guess I should explain the nickname too.......Madilyn was too big to be a pea and to little to be a nugget when she was born so I came up with Peanugga. My other children felt the need to explain to me that Peanugga isn't even a word but I explained right back that it's not a word.....she's a very real person and she's my Peanugga...:) Speaking of Peanugga's I worked all morning and she's been napping and the sun is out and beautiful and she's waking up now so we're heading out to enjoy some sunshine....
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