I'm feeling overwhelmed with specialists this month. I guess it is to be expected since we are seeing a bunch of specialists this month...
On top of the specialist we expected to see, Mary is having an issue with her heart, so we have to see a cardiologist.
Summer programming ended and Mary is trying to decide which color DynaVox VMax to order. Go here to vote on the color Mary should get. I'm really looking forward to the day we can take her DynaVox to the doctor's office and she can participate actively (as much as a 4 (almost 5) year old can) in the conversation. Today she used a voice-output switch and her pediatrician seemed impressed.
Next we see a special orthopedist, then a dentist, then ENT, then GI and opthamologist. And in there somewhere we have to get into cardiology. We should probably get checked out in Urology, as well, but that hasn't been thoroughly discussed. Mary has to have blood drawn for a 3rd time in 2 weeks and I am not looking forward to that. She is an awful stick! Slow blood and weak veins that no one can find... terrible time. It is so sad to watch. :(
Right now I am watching Mary play on the living room floor. She is scooting around on her belly and I don't know why, but she is making a beeline for the dining room. Overall, she is a happy and playful kid. We have good nurses working with her now. What a relief that is!!! We are patiently waiting for the Pre-K notification that says if she is in the morning or afternoon class. School starts Sept. 8 and Mary is going to be in regular ed. at the disctrict!
Wednesday, August 18, 2010
Thursday, August 12, 2010
DynaVox VMax Color Vote
Mary needs to choose a color for her new DynaVox VMax. She has 5 colors to choose from. We are taking a vote to see what people think would suit her best! Click on the color choices to go to the vote. There is also a blue DynaVox, but I couldn't find a picture of it.
this is the smaller sized version of the one she will get
She will not have the eye gaze part (black addition) on the bottom.
She will not have the silver tracking device on the top.
Check back at the end of the month to find out which color she is going to order!
Sunday, August 1, 2010
Start August with a bang...
Usually I'd like to keep this blog positive, uplifting and, in general a brag-fest about my wonderful daughter!
Today I decided to get real. This is how the day started at 5:45a.m.
Mary had a rough morning and woke up crying. Her g-tube medicine port had popped open and she was covered head-to-toe with foul-smelling Peptamen formula. Gross. She was so upset. :( And probably hungry, since several ounces of formula were on her bed instead of in her stomach. I think she must have had a lot of gas or something and pushed the g-tube open.
There was formula all over her bed, the crib bumper, her hair, her clothes, and her trach ties were soaked in it. She was coughing and crying so hard, she was also gagging a bit. I just wanted to pick her up and comfort her, but she was still connected to her monitors and feeding pump - and needed suctioning. She was also a disgusting mess.
Cleaning her off took a while, amidst suctioning her trach constantly. I took Mary out of her bed and cleaned her on the floor as best I could with baby wipes and wet washcloth. She was trying to cry and go back to sleep at the same time. I set her up cuddling in a blanket and hooked back up to the rest of her feeding on the floor while I dealt with the bed. She never did go back to sleep, though.
Once her feed was finished and I felt she was awake enough, I threw her in the tub and gave her a good soak. She smiled big appreciation for that! She hates to be messy.
We are doing better now, laundry in and new sheets on the bed. I am a bit worried about her, though. Gave her extra formula during the day today. I am not sure her tummy is feeling okay or if it is her back. I have wondered about this for a few days now. When she is in a good mood, I will have to try to talk with her and get an answer via DynaVox. Mary has told me and others about body parts and how she is feeling on a particular day, so hopefully this will work.
Other news: We have these g-tube pads that are pretty awesome! They are cute and just the right size and washable. I don't have to tape anything to Mary's belly or deal with little 2x2s falling out of her clothing anymore. We call them a little bling for her belly!
Today I decided to get real. This is how the day started at 5:45a.m.
Mary had a rough morning and woke up crying. Her g-tube medicine port had popped open and she was covered head-to-toe with foul-smelling Peptamen formula. Gross. She was so upset. :( And probably hungry, since several ounces of formula were on her bed instead of in her stomach. I think she must have had a lot of gas or something and pushed the g-tube open.
There was formula all over her bed, the crib bumper, her hair, her clothes, and her trach ties were soaked in it. She was coughing and crying so hard, she was also gagging a bit. I just wanted to pick her up and comfort her, but she was still connected to her monitors and feeding pump - and needed suctioning. She was also a disgusting mess.
Cleaning her off took a while, amidst suctioning her trach constantly. I took Mary out of her bed and cleaned her on the floor as best I could with baby wipes and wet washcloth. She was trying to cry and go back to sleep at the same time. I set her up cuddling in a blanket and hooked back up to the rest of her feeding on the floor while I dealt with the bed. She never did go back to sleep, though.
Once her feed was finished and I felt she was awake enough, I threw her in the tub and gave her a good soak. She smiled big appreciation for that! She hates to be messy.
We are doing better now, laundry in and new sheets on the bed. I am a bit worried about her, though. Gave her extra formula during the day today. I am not sure her tummy is feeling okay or if it is her back. I have wondered about this for a few days now. When she is in a good mood, I will have to try to talk with her and get an answer via DynaVox. Mary has told me and others about body parts and how she is feeling on a particular day, so hopefully this will work.
Other news: We have these g-tube pads that are pretty awesome! They are cute and just the right size and washable. I don't have to tape anything to Mary's belly or deal with little 2x2s falling out of her clothing anymore. We call them a little bling for her belly!
Wednesday, July 28, 2010
Mary is a a busy girl!
I have time to blog this summer since I am only working a few days a week. I decided I would fill you in on all the services and activities Mary does.
On Mondays, her nurse arrives early in the morning before we wake up and starts her medications, including nebulizers. She also disconnects her feeding pump checks her vitals. Therapies start with Occupational Therapy. Mary loves her OT! She also has special education and physical therapy on Mondays. Mary's nurse leaves when I return from work and I take Mary to Hippotherapy - her favorite part of the week! She rides on Scotty, the pony for 30 minutes to work on stretching and trunk control.
On Tuesdays, the nurse arrives for the same morning routine. Speech therapy begins with Mary today and they work on using the DynaVox. Mary then has OT and music therapy. Mary has vision services for an hour to work on strengthening those muscles. I arrive home and her nurse leaves. Mary then goes for pool therapy.
This summer, Wednesdays are fairly light for Mary and she only has Speech therapy and Special Education in the morning. She also has her Assistive Technology Consultant come to work with her on communication techniques. I stay home on Wednesdays and do all of her nursing care.
Thursdays, I am back to work, so the nurse arrives early for a.m. meds again. Mary has her third Speech therapy session for the week and begins her busy day. Mary also has OT, music therapy, and PT on Thursdays.
Fridays are very light - she only has PT in the middle of the day! Sometimes she has a nurse and sometimes she doesn't.
In August, we are going to a bunch of doctors. We have appointments with Neurology, Genetics, Orthopedics, and ENT. We already saw Pulmonary and G.I. this summer. The wheelchair vendor was out a few weeks ago, as well.
Busy, busy, busy!!!
On Mondays, her nurse arrives early in the morning before we wake up and starts her medications, including nebulizers. She also disconnects her feeding pump checks her vitals. Therapies start with Occupational Therapy. Mary loves her OT! She also has special education and physical therapy on Mondays. Mary's nurse leaves when I return from work and I take Mary to Hippotherapy - her favorite part of the week! She rides on Scotty, the pony for 30 minutes to work on stretching and trunk control.
On Tuesdays, the nurse arrives for the same morning routine. Speech therapy begins with Mary today and they work on using the DynaVox. Mary then has OT and music therapy. Mary has vision services for an hour to work on strengthening those muscles. I arrive home and her nurse leaves. Mary then goes for pool therapy.
This summer, Wednesdays are fairly light for Mary and she only has Speech therapy and Special Education in the morning. She also has her Assistive Technology Consultant come to work with her on communication techniques. I stay home on Wednesdays and do all of her nursing care.
Thursdays, I am back to work, so the nurse arrives early for a.m. meds again. Mary has her third Speech therapy session for the week and begins her busy day. Mary also has OT, music therapy, and PT on Thursdays.
Fridays are very light - she only has PT in the middle of the day! Sometimes she has a nurse and sometimes she doesn't.
In August, we are going to a bunch of doctors. We have appointments with Neurology, Genetics, Orthopedics, and ENT. We already saw Pulmonary and G.I. this summer. The wheelchair vendor was out a few weeks ago, as well.
Busy, busy, busy!!!
Tuesday, July 27, 2010
Saturday, July 24, 2010
Summer Update
It has been a busy July here! Mary is continuing to use her DynaVox and is doing very well! Her speech therapist and assistive technology person from school are writing justifications for her to get her own, with a wheelchair mount and other accessories this fall. Mary is able to answer yes/no questions, simple comprehension questions, talk on the phone with her grandmother, play pretend with her pony, tell us how she is feeling and other things with this device! It is fantastic! Mary always tells her nurses what she wants to do during the week by using her DynaVox and making choices.
In other news, Mary attended Vacation Bible School at church and Love Love LOVED it! We wish VBS was all summer long! Here are some pictures of all the fun she had.
 |
| most fun bounce house ever!!! |
Friday, July 9, 2010
Talking to Nonnie on the Telephone
Mary talked to her grandmother on the phone tonight! She told Nonnie about getting a pony and how she plays with him. Then she used her photo pages to tell Nonnie about other things in her life! Nonnie asked some yes/no questions and Mary answered them. I need to add greetings and an "I love you" to a page so that Mary can answer more than 'yes' when Nonnie says those things.
Oh yeah, Mary also figured out how to close a page that she navigated to mistakenly. She waits to hear the cue 'close.' I am so impressed with her!
Thursday, July 8, 2010
Mary got a pony
Well, not a real pony. It is a stuffed animal and she took to it immediately! The first thing she did was pet it's nose. Then we got her Dynavox out and I asked her some yes/no questions about it. 
I found out that this horse is a boy. The horse she rides each Monday is named Scotty, but she told me that she did not want to name this horse Scotty. I suggested Spotty and she said "yes." This is one way she plays with Spotty using her Dynavox.
I found out that this horse is a boy. The horse she rides each Monday is named Scotty, but she told me that she did not want to name this horse Scotty. I suggested Spotty and she said "yes." This is one way she plays with Spotty using her Dynavox.Monday, June 28, 2010
Sunday, June 20, 2010
Itsy Bitsy Spider
Mary's favorite children's song is Itsy Bitsy Spider. I am grateful that DynaVox has that programmed on their "Young Child" pages! It is one thing that Mary is using to learn DynaVox with. Mary really loves the DynaVox, but has only had it a few days. She has made a couple of choices - books, songs and TV shows.
They way she uses it is by hitting the blue switch when the device scans -visually and auditorily- the desired item. The device then says the choice that Mary made.
They way she uses it is by hitting the blue switch when the device scans -visually and auditorily- the desired item. The device then says the choice that Mary made.
Wednesday, June 9, 2010
communicating
Mary communicates in a variety of ways.
facial expressions
gestures
eye gaze (sort of)
switches
and she just tried our friend's Dynavox today!
facial expressions
gestures
eye gaze (sort of)
switches
and she just tried our friend's Dynavox today!
Tuesday, June 1, 2010
What is Mary up to?
Where do I start with all the new things Mary is doing now? She is doing to a typical nursery school and has a lot of friends there. Mary loves to have stories read to her. Her favorites are the Froggy series and Arthur series. Mary also likes to play in the activity room where she can roll around on the mat and try to stay away from the kids on bikes!
She has started horseback riding and swimming and really loves them both! Mary is constantly pretending to ride her pony, Scotty! She is really into barn animals and goes around the house pretending to be a chicken, as well!
Mary loves her baby-sitter, Jamie, and they are planning a trip to the Strong Museum of Play this summer. I am sure it will be a hit and we will have to become members!
She has started horseback riding and swimming and really loves them both! Mary is constantly pretending to ride her pony, Scotty! She is really into barn animals and goes around the house pretending to be a chicken, as well!
Mary loves her baby-sitter, Jamie, and they are planning a trip to the Strong Museum of Play this summer. I am sure it will be a hit and we will have to become members!
Saturday, January 30, 2010
Thursday, December 31, 2009
O M G
Life is busy...
We are home and having fun, but busy every minute of the day. She loves all her new toys and is very good at playing. She will be happy playing all day long...
So far, she has been mine for 11 days. We have done a ton of things in that time. She enjoyed the plane ride home... but Mommy spilled her pediasure all over the plane. oops.
Getting her gobs of things home in the van was a challenge, but we made it. I immediately got a migraine as we drove home and collapsed on the floor with my little girl at home. She played as I recovered... nice welcome home, huh?
In addition, supplies were delivered. A million supplies - trach kits, humidifier, tubing, sterile water, suction catheters, oxygen, saline, nebulizer kits, HME devices, probably more that I can't think of...
The next day ten UPS boxes arrived from her adoption agency. This kid has more stuff than god! Toys, stuffed animals, supplies, clothes, pediasure, bath chair, more supplies, day braces, night braces, etc.
THEN... We left town for the holiday! (Yes, go ahead and say that I am crazy.) She was a great kid through everything... happy and social! She loved it and we bonded nicely even though we were constanly in new places and meeting new people.
Mary and her Aunt Ellyde on Christmas
We are home and having fun, but busy every minute of the day. She loves all her new toys and is very good at playing. She will be happy playing all day long...
So far, she has been mine for 11 days. We have done a ton of things in that time. She enjoyed the plane ride home... but Mommy spilled her pediasure all over the plane. oops.
Getting her gobs of things home in the van was a challenge, but we made it. I immediately got a migraine as we drove home and collapsed on the floor with my little girl at home. She played as I recovered... nice welcome home, huh?
In addition, supplies were delivered. A million supplies - trach kits, humidifier, tubing, sterile water, suction catheters, oxygen, saline, nebulizer kits, HME devices, probably more that I can't think of...
The next day ten UPS boxes arrived from her adoption agency. This kid has more stuff than god! Toys, stuffed animals, supplies, clothes, pediasure, bath chair, more supplies, day braces, night braces, etc.
THEN... We left town for the holiday! (Yes, go ahead and say that I am crazy.) She was a great kid through everything... happy and social! She loved it and we bonded nicely even though we were constanly in new places and meeting new people.
Mary and her Aunt Ellyde on Christmas
Wednesday, December 16, 2009
Tuesday, December 15, 2009
Tuesday, December 1, 2009
Decided to go
I've decided to go.
The adoption paperwork and ICPC are done and completed.
The only thing holding us apart is state Medicaid transfer.
I'm planning on showing up on the agency doorstep later this month. If that doesn't get the gears moving, I don't know what will! I've let them know and I think (hope) they are preparing. I hope that paperwork has moved and plans are in motion. I hope that the foster mom has been told. I was told that we can have a meeting the first morning I am there. Her caseworker said that she was pleased about my decision.
This caseworker has been awesome! She has been very timely in all her work and so kind and professional on the phone. I have been very pleased.
I have my plane ticket, hotel and car reservation. One way or another, my little girl and I will be together for Christmas!
The adoption paperwork and ICPC are done and completed.
The only thing holding us apart is state Medicaid transfer.
I'm planning on showing up on the agency doorstep later this month. If that doesn't get the gears moving, I don't know what will! I've let them know and I think (hope) they are preparing. I hope that paperwork has moved and plans are in motion. I hope that the foster mom has been told. I was told that we can have a meeting the first morning I am there. Her caseworker said that she was pleased about my decision.
This caseworker has been awesome! She has been very timely in all her work and so kind and professional on the phone. I have been very pleased.
I have my plane ticket, hotel and car reservation. One way or another, my little girl and I will be together for Christmas!
Wednesday, November 11, 2009
an adoption shower
I was really blessed this weekend to have some friends throw me an adoption shower. My friend, Lee, was super excited about this and she went all out! Cake, decorations, favors... the whole shebang! Here are some pictures from the event.
The little kids really enjoyed helping open presents for a child their own age! The boy even liked the princess towel! :P
Alicia -aka Yaya- made matching mother/daughter scarves and hats! They are wonderful!
I asked Onni to be my daughter's Godmother. Her response was yes!
My friend Donna made the cake and everyone like it. She does great cakes!
I think everyone had a nice time and I was so pleased to have the support of my friends.
Wednesday, November 4, 2009
I'm Back
Hi
Sorry I disappeared for a while. Blogspot gave me trouble and I couldn't get on people's blogs for a while.
A lot has happened.
My little girl will be coming home at the end of this month!!!! The first week of Dec. at the latest! I will be in Florida for Thanksgiving.
She is so beautiful! She looks so smart. Her eyes are saying so much in the pictures I have seen.
She is right on target for weight and height for her age. She is delayed in her play skills, but likes age-appropriate TV shows, like Dora and Little Einsteins. She goes to preschool everyday and is learning communication skills.
I have completed most of my list. I met with the pediatrician and it went very well. We have a physical appointment set up for the middle of December. I found a nurse to attend school with her. I met with the school district and we are discussing appropriate placement. I have the phone company coming next week to install a line in her room. I am working on getting a night nurse. I have snow removal all arranged. I hope there isn't too much snow this winter!
Sorry I disappeared for a while. Blogspot gave me trouble and I couldn't get on people's blogs for a while.
A lot has happened.
My little girl will be coming home at the end of this month!!!! The first week of Dec. at the latest! I will be in Florida for Thanksgiving.
She is so beautiful! She looks so smart. Her eyes are saying so much in the pictures I have seen.
She is right on target for weight and height for her age. She is delayed in her play skills, but likes age-appropriate TV shows, like Dora and Little Einsteins. She goes to preschool everyday and is learning communication skills.
I have completed most of my list. I met with the pediatrician and it went very well. We have a physical appointment set up for the middle of December. I found a nurse to attend school with her. I met with the school district and we are discussing appropriate placement. I have the phone company coming next week to install a line in her room. I am working on getting a night nurse. I have snow removal all arranged. I hope there isn't too much snow this winter!
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