Ok so last post was just published now, July 23 2014, but was written back in spring 2013. Obviously I've been slacking in the blogging department. Believe it or not, we are one week from our son Everett's first birthday. In the last post I was only pregnant with the little guy. Crazy how time flies! Ok so updates. We'll start with Maddie since I left off with her last time. Let's see last spring Maddie was 1 1/2. Here's the biggest thing I remember about Maddie then. She learned how to climb out of her crib at 18 months. That's right...18 months! So we had to move her to a big kid bed. The problem was, she wasn't old enough to grasp the concept of staying in bed. We had to battle her/rock her/lay with her/anything most every night for hours, literally, to get her to sleep. She was a...determined little thing. Maddie, mommy and daddy will remind you of this someday when you think we are being unfair to you! Speaking of Maddie, determined is her middle name! She doesn't let anything stand in her way and she wants what she wants! Most days it was/is a battle of wills with her. We love that about her personality though and know it will suit her well someday because of her disability. Maddie's speech continued (and continues) to improve. At that time, she understood more than she could say. We had her evaluated for the Mama Lere Hearing School at Vanderbilt that spring and she could say around 7 - 10 words (or closely approximate the words).
That summer (2013) we closed on our house in Murfreesboro in June and then on our house we sold in Jackson in July. That was hectic to say the least! Once we got moved in, daddy had some time off as he wasn't supposed to start work in Shelbyville until August. Unfortunately the contract in Shelbyville fell through and he had to begin looking for other job opportunities. This was also extremely stressful! Luckily Austin was still contract employed with ER's in West Tennessee and went to work there for a bit while also working on a contract with a local ER staffing agency, Team Health. The contract with Team Health was finalized and Austin was placed full time in a small ER in Carthage, TN. He started that position in January of this year. It is a two year contract and so far he seems to like it there.
Everett William was born the summer of 2013, July 30th. He was born at 9:19 AM. I went to the hospital the night before dilated to 6 cm and Everett decided to just hang out there all night like that while I labored. The AM doctor came on shift, broke my water, and Everett came just about an hour or so later. I didn't have as much pain relief from the epidural this time so I really felt him! It could have been that he was the biggest baby too at 7 lbs 15 oz and 20 inches long. He was the sweetest baby. I would snuggle with him all day long. I think part of that too was knowing that he would probably be our last and I wanted to cherish every baby moment. Daddy got to spend a lot of time snuggling too. Everett was pretty easy overall. He slept through the night around 7 weeks old! However he HATED car rides. He cried nonstop riding in the car. This proved problematic (and irritating) in the fall when we were in the car all the time.
Fall 2013:
Ok so this past fall Abby started preschool at the First United Methodist Church in Murfreesboro. Maddie also started at the Mama Lere Hearing School at Vanderbilt two days a week. Abby loved preschool! It was great because it was only 4 hours a day so it wasn't too stressful or tiring for her. The drive was a bit tiring for mommy and daddy though since school was across town. Abby had fabulous teachers, Mrs. Trish and Mrs. Marigrace. They taught her so much! She is definitely prepared for Kindergarten now because of those two special ladies! Maddie started at the Mama Lere hearing school in the Fall and she loved her school as well! Her teachers were Miss Sarah and Mrs. Geniene and they were fabulous as well. There were only 6 kids in Maddie's class. Four had cochlear implants (including Maddie) and two were "typical" peers. They were only there for two and a half hours so mommy and/or daddy waited with Everett in a little room where we could observe the class. It was amazing to be able to witness Maddie Kate blossoming in the class, but also a little tiring sitting in there for two and a half hours twice a week...not to mention challenging once Everett was more alert. For this reason, we chose to enroll Maddie Kate in a local mothers day out program (actually at Abby's preschool) and start her in speech therapy twice a week. We saw Mrs. Suzanne for speech until May of this year when our insurance changed. Mrs. Suzanne was really good with Maddie and Maddie absolutely loved her! Maddie began speaking in two word sentences not long after she turned two...this is pretty typical for any two year old so of course we were ecstatic. The biggest problem Maddie has is being able to pronounce all of the consonants. She currently still struggles with C and G sounds as well as a few others.
Winter/Spring 2014 - Present
I'll start with Everett. So Everett started crawling at 6 1/2 months! We were floored! He was ready to move and chase his big sisters. Around 7 1/2 months he was pulling up. It didn't take him too much longer to get the hang of walking and was taking steps by 10 1/2 months. He is now not even a year old and is walking so well. He still falls some but is pretty steady. He can go so fast sometimes he is almost running! We call him our wild man because he gets into everything! I don't remember the girls being quite this active or getting into things quite this much. Everett loves to be outside and no longer hates car rides. In fact he seems to quite enjoy them. Thank goodness! Right now Everett is at the stage where he puts everything in his mouth so we have really have had to baby proof and watch him constantly. If we forget to put the dog food away, he goes straight for it. If we leave the gate to the stairs open, he makes a beeline for the stairs. If we leave the bathroom door open, he sees that as his opportunity to play in the toilet and unroll all the toilet paper. As you can probably see, he keeps us on our toes! He is definitely a boy! He even ate sand at the beach! The best part about Austin's job is he gets to be home a lot more than he used to. He is realizing now how much he missed with the girl's growing up, but is happy he is getting to watch Everett grow and change now. He is also loving spending time with the girls. Everett is also very loud/vocal when he does not get what he wants. He literally screams in his high chair if you are not giving him food fast enough. We are currently trying to break him of that. Speaking of food, Everett loves to eat. If you are eating, he thinks he should be eating too. I don't know where he puts it though! Oh that's right...he spits it up. Everett has had chronic spit up since he was a baby. We thought at 6 months he would outgrow it, but no. The girls spit up, but nothing like this. We had to start him on solid food at 4 months because he wasn't gaining enough weight. At 6 months he still hadn't gained much weight. At 6 months I stopped nursing and switched him to formula. We tried so many different formulas trying to find one that would help the spit up with no luck. Finally at 9 months we started him on reflux medicine. He had finally gained weight by 9 months even though he was still spitting up. I guess that's because he ate so much! The spit up decreased with meds but was (and is) still present. I'm really hoping that his birthday will be the magic day when he stops spitting up! Anyway. Ok Daddy wanted me to mention that Everett figured out how to blow a duck call at 11 months! Maybe we have a future duck hunter on our hands! Everett loves to talk/babble. We think he is going to be an early talker. He already says the typical mama, dada, bye...but he also has babbled what we think is Abigail, maddie kate, Sergio (he calls go), nana, papaw, and more I'm sure. He loves his memaw because she always takes him for walks outside in his wagon! He also does this Indian call (bababababa) with his hand. Ok enough on Everett...on to Maddie Kate.
Maddie Kate this year has grown tremendously in personality and vocabulary. Except for pronunciation, she talks just as well as any normal developing 2, almost 3, year old. Her personality is awesome. I love it when kids' personalities develop and you can see what they are going to be like years from now. Maddie loves to laugh and make people laugh. She loves to play games that she thinks will make you laugh...such as "Where's Maddie? (she closes her eyes and then opens) Boo! hahaha" Her laugh is infectious and just the sweetest thing. Well all the kids have a sweet laugh! Maddie also loves to play with baby dolls. She has a natural nurturing personality. She loves to change their diapers and they always seem to have "shoo stinky!" diapers. Maddie gets in trouble a lot right now because she is in the dreaded "terrible twos." She hits a lot and has trouble listening when she doesn't want to. The hitting is definitely getting better now that her vocabulary is increasing and you can reason with her more. The funniest thing is Maddie "disciplines" her dolls. She puts her dolls in time out for doing things she, I mean they, are not supposed to do. Maddie is now in speech with Mrs. Hillary. We love Mrs. Hillary and so does Maddie Kate. Maddie's speech has really improved since being with her. Daddy and mommy (but mostly daddy) also work with Maddie on her speech at home. Maddie seems to respond better to Austin so he usually gets that task which is okay with him because he enjoys it. The best thing is when Maddie says a word correctly, her response is an elated "I did it" followed by a necessary high five. Maddie also loves movies. Her favorite movies are "Tangled", "Princess and the Frog", "Lady and the Tramp", and "Totoro." She will ask for these movies and the way she says the names of them are priceless. It's hard to understand her sometimes when she says the names of them, but I think we have them all figured out now. She gets really frustrated when you don't understand what she is trying to say. Maddie is also a little, ahem, OCD. I wonder who she gets that from, ahem, me. She likes things a certain way, whether its a routine, or putting a blanket on a baby a certain way...etc. She also is "Miss Independent" and has to do everything by herself...using the bathroom, putting on clothes, etc. Speaking of using the bathroom, we almost have her potty trained. Memaw initiated an M&M reward system with Maddie. The first thing Maddie says after she goes #2 is "Yay! I get 6 M&M's!" Maddie also likes to help me in the garden and is almost always barefoot in it! One more thing, Maddie loves to hang upside down. If we are holding her, she will hold on to our hands and lean back with her head towards the ground. She calls herself an "upside down bat." Another funny story is the scaredy story. So one day Abby was pretending there were "scaredies" that were chasing them. Well Maddie got really scared because she didn't realize Abby was just pretending. Daddy had to calm her down by telling her he was going to beat those scaredies away. Once she figured out they were pretend, she decided she was going to "pop some scardies. pop pop!" She has us rolling with the scardies. Out of nowhere she will say "uh oh I see scardies! pop pop (and pretend to pop them like a balloon). Ok now to Abby...
Abby turned 5 years old this year! I can't believe our little baby is 5 already and going to start kindergarten soon! Some new activities this year... In the fall her and Maddie did gymnastics. Maddie loved gymnastics but would not listen. Abby did not care for gymnastics. I think it scared her a little. Now she says she wants to do it again though. This spring Abby also did soccer. The soccer season was, shall we say, interesting. Abby can be a little...dreamy...sometimes and that showed up on the soccer field. She did great in practice, but when it came to games, she just stood on the field and watched everyone else play. That is until the last couple of games. Abby finally started running after the ball and even kicked it a couple of times! This was a great improvement for her and coach was so proud. We of course were proud as well. We just wanted her to try! We were so proud of our little soccer player not only because she tried, but also because she memorized her bible verses every week! She was one of the only players who always had them memorized. She also seemed to really get a grasp on the "rules" of soccer. We think this is what held her back at first. She was too busy thinking about the rules and making sure she was doing it right. We finally told her to stop thinking and just start running after the ball! Abby graduated Pre-K this year. She did so well! She can write and recognize all of her upper and lower case ABC's, she can count to 100, she can add some small numbers, she can write her name, she has her phone number memorized, and she is even beginning to read. Hop on Pop is her favorite reading book! The first thing Abby did on her summer break was vacation and then immediately into summer theater camp. She was in theater camp for three weeks where they learned the production of the Little Mermaid, Jr. Abby was a blue fish in the play and did so well! She met some new friends while in camp. Her favorite friend was Clark. They cut up a little too much though. She told us after the camp was over that she never wanted to do camp again. :( We will see what she says next year. Surprisingly she does say she wants to do soccer again next year. Abby speaks pretty well now. She still has a few words she messes up like "restanot" instead of restaurant. She tries to sound (and does sound) so grown up when she speaks now. She loves her baby brother. She loves to carry him around and talk to him in a baby voice. She really mimics what adults do. It's hilarious! She is really sweet and nurturing with him and with Maddie if Maddie is hurt or sad. Tonight at church Abby gave a prayer request in her class that Maddie would be able to hear again someday without her implants. It was so sweet. Some things Abby loves to do now are chores and swinging by herself. She loves to help around the house and thinks chores are just the best thing ever! Her favorite chores are usually dusting or cleaning windows because she gets to spray the dusting polish or windex and that's fun for her. She also likes organizing and decorating. She is constantly rearranging things or hanging decorations on the stairs. She takes after her mommy in that department. We've butted heads some on this though because she wants to rearrange things that I don't want rearranged. I tell her that she can decorate her room and the playroom and that someday she can decorate her own house. As far as swinging, we finally have a swingset of our own and Abby loves to go outside and swing by herself. I think she likes the alone time and likes the fact that she can swing herself. Abby also gets the highlights magazine now and loves the hidden pictures puzzles in it. She will forego a nap and do hidden picture puzzles or play on her leap pad as her "rest time." Sometimes she falls asleep anyway. Abby loves organizing games to play. She will say, "you be the doctor, I'll be the baby who has to go to the doctor because my leg is broke, and Maddie will be the mommy." Then we have to act accordingly. Abby has such a sweet personality. She will make sure she spends equal time with mommy and daddy. If she's been snuggling with mommy a lot, she will say she needs to go snuggle with daddy so he doesn't feel left out and vice versa. Daddy says he loves reading with Abby and hearing her list every family member when she prays at night. I have to say I agree. We also both love snuggling for movie nights with Abby. Maddie doesn't usually sit still long enough to snuggle yet and Everett is usually already in bed. Abby loves movie night because she gets to have popcorn and ice water! ha! Maddie doesn't like popcorn and usually gets goldfish or fruit snacks.
I guess that is all for tonight. I will probably have more to post soon.
Thursday, July 24, 2014
Wednesday, July 23, 2014
Wow it's Spring! (I meant to post this in spring of 2013. Ha it's now summer 2014!)
So I think that the only explanation of why I haven't posted since September is that I've been in hibernation. No but seriously I can't believe I've taken this long to post again. I really have to get better but I don't think my schedule is getting any less hectic any time soon. One of the reasons I keep a blog is as a makeshift baby book that my kids can look at someday when they are older. I figured if I didn't get to blogging again soon, I would forget everything new that's happened over the past 6+ months.
The first new thing that has happened since September is that we are expecting our 3rd child in August, a boy! His name will be Everett William. Everett is just a name we like and William is named after Austin's pappy, William (Bill) Kegg. Pappy was such a strong and positive influence in Austin's life as a child, so this is a way to honor him. Austin is very excited about his first boy and is already planning hunting and fishing trips! We are both excited, truth be told. Other news is that we have listed our house with a realtor now. We took it off "for sale by owner" around the holidays and decided to relist with a realtor this spring. The house has been on the market for about a month now, but no offer yet. Regardless, we will still be moving back to the boro in July. Now onto the girls...
So starting with Abby, Abby turned 4 years old last month. She finally feels like a big girl. She feels like everything new she gets to do is "because she is 4 right?" Any previous concerns we had about her not speaking are most definitely out the window! This girl never stops talking! I really need to talk to my parents and see if I talked this much at this age. The funniest part about her speech is that she tries to mimic grown up sayings. I wish I could remember some specific examples right now, but I have baby brain...at least that's what I'm going to claim. Next time she says something funny, I'm going to write it down. Many times she says words incorrectly which can be funny too. The only thing I can remember right now that she consistently says incorrectly is instead of "forget", she says "reget".
Abby has quite an imagination. I guess that is normal at her age? She comes up with pretend stories all the time, usually which are based on something she has seen or heard. This morning going to moms and more, she told me a story the entire way there and was still talking on the way inside. Her story was about how she lived in a cave and her momma bear protected her from another mean bear. It was obviously more elaborate than that, but can you guess what movie she watched recently? Yep, Brave. Abby also is becoming quite the singer. She used to be pretty tone deaf, but now her singing isn't half bad. Her favorite songs to sing are from the little mermaid. She loves to pretend she is Ariel and that she can't speak. I usually have to play the role of Prince Eric or Ursula. Lol.
Abby also has a very good memory, she can remember things I said weeks ago! I definitely can't tell her that "we can go to the park tomorrow" and then hope she forgets if its been a hectic day. Oh no, she will remind me. She is also very helpful at reminding us if we've forgotten to buckle her up (which does happen occasionally in a hurry!). Thankfully she usually reminds us right away.
As far as personality, she used to be quite shy. Not so anymore. She is very outgoing and tends to take on a leader role in many of her play groups. She also used to be quite cautious, but is now a lot more confident in her motor skills. She even takes getting a "boo-boo" much better now and will say "it's ok, it's just a scrape" or "no problem, it was just an accident", when before it was drama over every little thing. She is definitely maturing. Abby is also very helpful. She loves to help me around the house. Some of the chores she helps with are wiping down the bathroom counters, picking up her toys, making her bed, wiping the kitchen table and putting dinner dishes in the sink. Abby also helps "teach" Maddie Kate. Right now we are working on animal sounds with Maddie and Abby is such a big helper. Maddie loves to do everything her big sister does which helps. Abby also really wants to help put maddie to bed. She wants to be the one who rocks her and sings her a lullaby. Maddie won't have any of that though. I think Abby will really enjoy her baby brother because she will actually be old enough to help out now. She is so nurturing.
Since Abby will be 5 in no time at all, we have been working on pre-reading skills (thank God for iphone apps!). Abby seems more receptive to reading now that she's four but is not there yet. She is starting to recognize many two letter sight words and a few longer words like big, cat, see, and jump. She can also write her name now although sometimes the "tail" of her "y" extends down the entire page instead of stopping where the other letters stop. I guess that's it for Abby. Now onto Maddie Kate...
(Sorry Maddie. This is wear I left off back in 2013. I will update new things in the next post...2014 :/)
The first new thing that has happened since September is that we are expecting our 3rd child in August, a boy! His name will be Everett William. Everett is just a name we like and William is named after Austin's pappy, William (Bill) Kegg. Pappy was such a strong and positive influence in Austin's life as a child, so this is a way to honor him. Austin is very excited about his first boy and is already planning hunting and fishing trips! We are both excited, truth be told. Other news is that we have listed our house with a realtor now. We took it off "for sale by owner" around the holidays and decided to relist with a realtor this spring. The house has been on the market for about a month now, but no offer yet. Regardless, we will still be moving back to the boro in July. Now onto the girls...
So starting with Abby, Abby turned 4 years old last month. She finally feels like a big girl. She feels like everything new she gets to do is "because she is 4 right?" Any previous concerns we had about her not speaking are most definitely out the window! This girl never stops talking! I really need to talk to my parents and see if I talked this much at this age. The funniest part about her speech is that she tries to mimic grown up sayings. I wish I could remember some specific examples right now, but I have baby brain...at least that's what I'm going to claim. Next time she says something funny, I'm going to write it down. Many times she says words incorrectly which can be funny too. The only thing I can remember right now that she consistently says incorrectly is instead of "forget", she says "reget".
Abby has quite an imagination. I guess that is normal at her age? She comes up with pretend stories all the time, usually which are based on something she has seen or heard. This morning going to moms and more, she told me a story the entire way there and was still talking on the way inside. Her story was about how she lived in a cave and her momma bear protected her from another mean bear. It was obviously more elaborate than that, but can you guess what movie she watched recently? Yep, Brave. Abby also is becoming quite the singer. She used to be pretty tone deaf, but now her singing isn't half bad. Her favorite songs to sing are from the little mermaid. She loves to pretend she is Ariel and that she can't speak. I usually have to play the role of Prince Eric or Ursula. Lol.
Abby also has a very good memory, she can remember things I said weeks ago! I definitely can't tell her that "we can go to the park tomorrow" and then hope she forgets if its been a hectic day. Oh no, she will remind me. She is also very helpful at reminding us if we've forgotten to buckle her up (which does happen occasionally in a hurry!). Thankfully she usually reminds us right away.
As far as personality, she used to be quite shy. Not so anymore. She is very outgoing and tends to take on a leader role in many of her play groups. She also used to be quite cautious, but is now a lot more confident in her motor skills. She even takes getting a "boo-boo" much better now and will say "it's ok, it's just a scrape" or "no problem, it was just an accident", when before it was drama over every little thing. She is definitely maturing. Abby is also very helpful. She loves to help me around the house. Some of the chores she helps with are wiping down the bathroom counters, picking up her toys, making her bed, wiping the kitchen table and putting dinner dishes in the sink. Abby also helps "teach" Maddie Kate. Right now we are working on animal sounds with Maddie and Abby is such a big helper. Maddie loves to do everything her big sister does which helps. Abby also really wants to help put maddie to bed. She wants to be the one who rocks her and sings her a lullaby. Maddie won't have any of that though. I think Abby will really enjoy her baby brother because she will actually be old enough to help out now. She is so nurturing.
Since Abby will be 5 in no time at all, we have been working on pre-reading skills (thank God for iphone apps!). Abby seems more receptive to reading now that she's four but is not there yet. She is starting to recognize many two letter sight words and a few longer words like big, cat, see, and jump. She can also write her name now although sometimes the "tail" of her "y" extends down the entire page instead of stopping where the other letters stop. I guess that's it for Abby. Now onto Maddie Kate...
(Sorry Maddie. This is wear I left off back in 2013. I will update new things in the next post...2014 :/)
Sunday, September 23, 2012
Sorry! Finally posting again...
Well life has been extremely busy lately which is why I haven't had the time to post. Sorry guys! There has literally been only 1 weekend since April where both Austin and I have been home. If we haven't had an event going on, Austin has to work...if Austin doesn't have to work, then we have an event going on (usually that involves travel). In fact today was the first time we have attended our church in 6 weeks! We have traveled for 6 weeks straight! On top of that, we are trying to sell our house ourselves which involves quite a bit of work. So, sorry everyone, but we won't be traveling anymore for awhile!
New for Maddie Kate: Well Maddie Kate had her hearing test in May which determined that she did indeed need the cochlear implants rather than hearing aids. We then had vacation end of May first of June which was Maddie's first trip to the beach. Maddie started crawling some time in June when she was around 8 - 8 1/2 months. In August, when Maddie was around 11 months, she began taking steps. She has taken her time with full our walking, but within the past week she has been walking everywhere! She is finally ready! Maddie Kate had surgery for her cochlear implants on August 17th. She did great! We really weren't too surprised what a trooper she was. That's just her attitude. She is a strong willed and determined young lady. She received the external piece to her implants on September 14th which enabled her to hear. We were hoping for some exciting display of her ability to hear, but it was overall pretty anti-climatic. :( Oh well. We have seen enough over the last week to keep things exciting. We are very pleased with how Maddie Kate reacts to sound now. We were given several set volume levels for her implants and have slowly been turning up the volume. She is really handling the sound well which could be the reason for the pretty anti-climatic implant activation! The audiologists are surprised at how well and how quickly she is handling sound. She must really want to hear! She definitely reacts to loud sounds and now that we have the volume turned up, she is reacting to our voices as well! She didn't mess with her implants until I turned her volume up yesterday. Now she keeps wanting to pull the right one off. I hope it's not too much sound for her. I may have to readjust the volume on that side.
Developmentally, Maddie is right on track. She had a developmental test last Tuesday and was scored above average for cognition, average for motor skills, and below average for communication (obviously!). We are very pleased with her progress considering her outlook at birth. She is a little firecracker that is for sure. She wants to get into every cabinet and door. I have to daily pick up tupperware or headbands or towels that she has decided to pull out. I have childproofed most cabinets, just not all. She loves to be outside and loves to look at books. A good day for Maddie is to be outside all day and to get as much to eat as she wants! I'm really trying hard to work with Maddie with words now that she can hear, but I have another child vying for attention! Speaking of Abby...
Abby is so funny now. She has transformed from a very quiet, independent child to a loquacious, social child! Today we went on a walk and she just talked the entire walk. Half the time I wasn't even sure what she was talking about! She kept telling me about watching a pretend car movie at pretend school and she had an entire story weaved around that. She's hilarious! She loves to make us laugh, but does not like to be laughed at. She has a very tender heart and does not like to get in trouble. She is very motherly is a really a great big sister to Maddie Kate. Her imagination is wild! She can sit and play make believe with her toys forever or make up stories like she did on our walk today. She also has an unbelievable memory. I'm not sure if all 3 year olds can remember as well as she does, but it is pretty fascinating. Maybe it's only fascinating because I don't have ANY memory anymore. lol. Abby is also becoming more active and less upset over "boo-boos." She fell several times today at the park and hardly made a peep. Before, it would have been drama until a band-aid was applied (even if there wasn't any blood). Another funny thing Abby told us the other day is that she is going to college to be a doctor, but mommy and memaw were coming with her! lol. I am so going to remind her of that some day!
New for Austin and I: Nothing really new for me except that I am just tired from chasing after a 1 year old and trying to communicate with a 3 year old. Austin is actually working on a contract with a physician in Shelbyville. Hopefully we will have a finished contract within the next month. It is taking a while to nail down details but is a necessary evil. We are looking forward to moving back to Murfreesboro within the next year. It will be nice to be close to everyone again!
New for Maddie Kate: Well Maddie Kate had her hearing test in May which determined that she did indeed need the cochlear implants rather than hearing aids. We then had vacation end of May first of June which was Maddie's first trip to the beach. Maddie started crawling some time in June when she was around 8 - 8 1/2 months. In August, when Maddie was around 11 months, she began taking steps. She has taken her time with full our walking, but within the past week she has been walking everywhere! She is finally ready! Maddie Kate had surgery for her cochlear implants on August 17th. She did great! We really weren't too surprised what a trooper she was. That's just her attitude. She is a strong willed and determined young lady. She received the external piece to her implants on September 14th which enabled her to hear. We were hoping for some exciting display of her ability to hear, but it was overall pretty anti-climatic. :( Oh well. We have seen enough over the last week to keep things exciting. We are very pleased with how Maddie Kate reacts to sound now. We were given several set volume levels for her implants and have slowly been turning up the volume. She is really handling the sound well which could be the reason for the pretty anti-climatic implant activation! The audiologists are surprised at how well and how quickly she is handling sound. She must really want to hear! She definitely reacts to loud sounds and now that we have the volume turned up, she is reacting to our voices as well! She didn't mess with her implants until I turned her volume up yesterday. Now she keeps wanting to pull the right one off. I hope it's not too much sound for her. I may have to readjust the volume on that side.
Developmentally, Maddie is right on track. She had a developmental test last Tuesday and was scored above average for cognition, average for motor skills, and below average for communication (obviously!). We are very pleased with her progress considering her outlook at birth. She is a little firecracker that is for sure. She wants to get into every cabinet and door. I have to daily pick up tupperware or headbands or towels that she has decided to pull out. I have childproofed most cabinets, just not all. She loves to be outside and loves to look at books. A good day for Maddie is to be outside all day and to get as much to eat as she wants! I'm really trying hard to work with Maddie with words now that she can hear, but I have another child vying for attention! Speaking of Abby...
Abby is so funny now. She has transformed from a very quiet, independent child to a loquacious, social child! Today we went on a walk and she just talked the entire walk. Half the time I wasn't even sure what she was talking about! She kept telling me about watching a pretend car movie at pretend school and she had an entire story weaved around that. She's hilarious! She loves to make us laugh, but does not like to be laughed at. She has a very tender heart and does not like to get in trouble. She is very motherly is a really a great big sister to Maddie Kate. Her imagination is wild! She can sit and play make believe with her toys forever or make up stories like she did on our walk today. She also has an unbelievable memory. I'm not sure if all 3 year olds can remember as well as she does, but it is pretty fascinating. Maybe it's only fascinating because I don't have ANY memory anymore. lol. Abby is also becoming more active and less upset over "boo-boos." She fell several times today at the park and hardly made a peep. Before, it would have been drama until a band-aid was applied (even if there wasn't any blood). Another funny thing Abby told us the other day is that she is going to college to be a doctor, but mommy and memaw were coming with her! lol. I am so going to remind her of that some day!
New for Austin and I: Nothing really new for me except that I am just tired from chasing after a 1 year old and trying to communicate with a 3 year old. Austin is actually working on a contract with a physician in Shelbyville. Hopefully we will have a finished contract within the next month. It is taking a while to nail down details but is a necessary evil. We are looking forward to moving back to Murfreesboro within the next year. It will be nice to be close to everyone again!
Monday, April 16, 2012
It's been awhile...
Sorry that I have not posted in awhile. There have been several new things that have happened. Abby had her 3rd birthday party and it was a blast! Abby had so much fun playing with her cousins and friends in the inflatable! Maddie Kate is growing like a weed. She has two teeth now. Her second tooth came in on April 5th. Maddie is also officially army crawling now, but she is also getting up on all fours and rocking and lunging forward. She will be crawling in no time at all. Maddie Kate's new favorite thing is to pull out her hearing aids and put them in her mouth. It is a battle everyday to keep them in. I guess I'm going to have to start taping them to her head!
Abby's speech is improving everyday. She still says a few funny things though. For example, when she pluralizes words, she adds an "a" before the "s". So instead of saying "socks," she would say "sockas". We can't seem to break her of this habit. She also says "crap" instead of "crack." She told me the other day that her chip had a crap in it. She is becoming the regular helper nowadays. She likes to help me with Maddie Kate and likes to help me clean and grocery shop. She tells me she "loves to shop." Oh boy! She also has a little baby doll that she has named "little Maddie Kate." She also has taken one of her purses and turned it into a diaper bag for little Maddie Kate.
Things to come: We have Maddie Kate's next hearing test on May 2nd. This hearing test is called a behavorial hearing test. The test will be done without her aids on. The audiologist will play sounds and increasingly higher decibals until Maddie Kate responds to the sound. This is how we will know exactly how profound her hearing loss is. It will also let us know whether she will for sure need cochlear implants or if she would do well with just the hearing aids. Also, Austin has a couple of interviews set up with some clinics in Middle Tennessee. One in Shelbyville and one in Murfreesboro. Obviously we are not signing any contracts until we know what we are going to do about Maddie Kate (whether she will need to attend school at the Vanderbilt Mama Lere Hearing School or not). Another thing coming up is that we are getting professional pictures of the girls. We are going to try and get this scheduled for next week. We have not had any professional pictures taken of Maddie Kate yet.
Abby's speech is improving everyday. She still says a few funny things though. For example, when she pluralizes words, she adds an "a" before the "s". So instead of saying "socks," she would say "sockas". We can't seem to break her of this habit. She also says "crap" instead of "crack." She told me the other day that her chip had a crap in it. She is becoming the regular helper nowadays. She likes to help me with Maddie Kate and likes to help me clean and grocery shop. She tells me she "loves to shop." Oh boy! She also has a little baby doll that she has named "little Maddie Kate." She also has taken one of her purses and turned it into a diaper bag for little Maddie Kate.
Things to come: We have Maddie Kate's next hearing test on May 2nd. This hearing test is called a behavorial hearing test. The test will be done without her aids on. The audiologist will play sounds and increasingly higher decibals until Maddie Kate responds to the sound. This is how we will know exactly how profound her hearing loss is. It will also let us know whether she will for sure need cochlear implants or if she would do well with just the hearing aids. Also, Austin has a couple of interviews set up with some clinics in Middle Tennessee. One in Shelbyville and one in Murfreesboro. Obviously we are not signing any contracts until we know what we are going to do about Maddie Kate (whether she will need to attend school at the Vanderbilt Mama Lere Hearing School or not). Another thing coming up is that we are getting professional pictures of the girls. We are going to try and get this scheduled for next week. We have not had any professional pictures taken of Maddie Kate yet.
Friday, March 16, 2012
Spring is in the air...
Well spring is officially in the air. Yeah! I cannot wait for this summer. I am looking forward to all of the fun things we are going to be able to do with the girls.
Maddie Kate has cut her first tooth. She cut it on March 3rd. Also she is officially sitting up! I am working on uploading new pictures and videos to our shutterfly site so check them out at www.themackensfamily.shutterfly.com. It may take a few hours to upload so maybe check back tomorrow. Maddie is also wants to crawl really bad. She is almost getting up on all fours, but is not quite there yet. When she scoots, she usually either moves in a circle or scoots backward. She has not been able to pull herself forward yet.
Abby is getting very excited about her Dora birthday party coming up! We sure hope it doesn't rain so that we can have the inflatable for the kids! Abby has been a very big helper lately and helps do the dishes almost every night. She also is gettting to where she likes to help with Maddie Kate more.
Maddie Kate has cut her first tooth. She cut it on March 3rd. Also she is officially sitting up! I am working on uploading new pictures and videos to our shutterfly site so check them out at www.themackensfamily.shutterfly.com. It may take a few hours to upload so maybe check back tomorrow. Maddie is also wants to crawl really bad. She is almost getting up on all fours, but is not quite there yet. When she scoots, she usually either moves in a circle or scoots backward. She has not been able to pull herself forward yet.
Abby is getting very excited about her Dora birthday party coming up! We sure hope it doesn't rain so that we can have the inflatable for the kids! Abby has been a very big helper lately and helps do the dishes almost every night. She also is gettting to where she likes to help with Maddie Kate more.
Tuesday, February 14, 2012
New things for Maddie Kate
Maddie Kate is 5 months now. Yeah! As of this past weekend, she is now rolling over both ways!! We think she may be cutting her first tooth. She has had some sleepless nights lately and has a little place on her gums that looks primed for a tooth. Her new favorite thing is jumping in her jumper. I think she likes it so much because she can stand in it, and she loves to stand! She can sit supported and is on the verge of sitting unsupported.
Maddie's hearing aids are still working very well for her. We have to get new ear molds about every month because her ears are growing so fast. She definitely vocalizes a lot more with the aids on but we still don't know how much language she is getting. When she is able to sit up independently and turn her head towards sounds, they will do another hearing test. They do not want to do the same test they did when she was 3 weeks old because they would have to sedate her now to keep her from moving during the test.
Abby is growing too. She will be 3 years old next month. She is talking a lot more and a lot more clearly now. She is definitely at the imitating stage too and she loves to be a big helper. Last night she helped me wash the dishes. So cute! She loves school and loves learning. She knows how to count to 10 in spanish now. She has lots of "favorites" now. Her favorite TV show is Dora the Explorer, her favorite stuffed animal is pokey puppy, her favorite color is pink, and her favorite book is Lady and the Tramp. These could of course all change next week. She has many more favorites and likes to tell you things that are her favorite all the time. For example, we were eating soup the other day and I said "why don't you take a bite of carrot. You like carrots." And she said "mmm, carrots are my favorite!" Of course the corn and the beans in the soup were apparently her favorites too.
Maddie's hearing aids are still working very well for her. We have to get new ear molds about every month because her ears are growing so fast. She definitely vocalizes a lot more with the aids on but we still don't know how much language she is getting. When she is able to sit up independently and turn her head towards sounds, they will do another hearing test. They do not want to do the same test they did when she was 3 weeks old because they would have to sedate her now to keep her from moving during the test.
Abby is growing too. She will be 3 years old next month. She is talking a lot more and a lot more clearly now. She is definitely at the imitating stage too and she loves to be a big helper. Last night she helped me wash the dishes. So cute! She loves school and loves learning. She knows how to count to 10 in spanish now. She has lots of "favorites" now. Her favorite TV show is Dora the Explorer, her favorite stuffed animal is pokey puppy, her favorite color is pink, and her favorite book is Lady and the Tramp. These could of course all change next week. She has many more favorites and likes to tell you things that are her favorite all the time. For example, we were eating soup the other day and I said "why don't you take a bite of carrot. You like carrots." And she said "mmm, carrots are my favorite!" Of course the corn and the beans in the soup were apparently her favorites too.
Wednesday, January 4, 2012
Maddie Kate update
Maddie Kate is just such a miracle! We had labs drawn today at her GI appointment and all have improved. Her bilirubin is finally normal at 0.6! Yeah! So no more medicine for Maddie! Her liver functions have also improved. The GI doctor says we won't have to come back for another 6 months! Can you believe that in 6 months Maddie will be 10 months old? Time sure is flying.
Other firsts: Maddie has started solids. She has had rice cereal and pears. She is not crazy about the rice cereal but loves the pears! We plan on trying sweet potatoes next. I had planned on waiting until closer till 6 months to start solids but when she started waking up in the middle of the night starving and she was already taking full bottles during the day, we decided it was time. Also Maddie Kate has started laughing. She really does have the sweetest laugh! She is still rolling over front to back but is not quite ready to roll back to front. She has discovered her hands but not her feet yet. And she is gaining abdominal strength and will be sitting up before we know it!
Ok, I bid you adieu. I hope God blesses your life in an unimaginable way like he has ours.
Other firsts: Maddie has started solids. She has had rice cereal and pears. She is not crazy about the rice cereal but loves the pears! We plan on trying sweet potatoes next. I had planned on waiting until closer till 6 months to start solids but when she started waking up in the middle of the night starving and she was already taking full bottles during the day, we decided it was time. Also Maddie Kate has started laughing. She really does have the sweetest laugh! She is still rolling over front to back but is not quite ready to roll back to front. She has discovered her hands but not her feet yet. And she is gaining abdominal strength and will be sitting up before we know it!
Ok, I bid you adieu. I hope God blesses your life in an unimaginable way like he has ours.
Friday, December 9, 2011
Update 12/9/11
Well we are at chuck e cheese and Abby and Austin are off playing games so I thought I'd take a moment to update the blog.
Let's see...what's new? Well we got a call last week saying maddie needed a liver biopsy because her liver functions were not improving. So we scheduled the biopsy for the 8th. We already had an ID appointment on the first and were scheduled to get her hearing aids on the 2nd. They told us she needed an ultrasound and blood drawn before getting the biopsy so we did that on the 1st as well. Then we got a call on Monday this week with the results of her labs. They said that her liver enzymes had gone back down and her total bilirubin was around 1.5 (I can't remember the exact number). Because of this, they cancelled the biopsy! Yeah! What a blessing!
The ID appointment was just a check up. We told them we had discontinued use of the valganciclovir because we felt there were just not enough studies to prove that cancer wasn't a consequence of long term use. They said that was fine and that we wouldn't need to see them anymore unless we changed our minds.
The hearing aid appointment was great! We got Maddie's loaner hearing aids which are 2 different colors. She said that if we wanted the same color, we would have to get a lower model aid. It didn't matter to me because when hers come in, they will be pink! The hearing aid brand is Phonak and the model is Naida. I have researched these and apparently they give them back 80 decibels of sound! Maddie really seems to be responding to them! The first time we put them in, she just cooed like crazy! I have been praying daily for God to allow Maddie Kate to hear and what an amazing blessing we have received!
Saturday, December 3, 2011
Tuesday, November 29, 2011
Update 11/29/11
Well we got snow here in Jackson yesterday and today. I can't remember the last time we've had snow in November! Abby enjoyed it. We're going to have to get her some snow boots though because she's grown out of hers from last year.
We go Thursday for an appointment with Infectious Disease. We decided to take Maddie off the valganciclover because the drug is still relatively new and not enough studies have been done to prove that there is no cancer risk in humans. I just don't want to take the chance. Also Maddie has an appointment on Friday to get her hearing aids. I am anxious to see how she does with them! Also, we found out yesterday that she is going to have to have a liver biopsy next week because her liver enzymes are not improving. I guess they just want to be on the safe side and make sure nothing serious is going on.
Other firsts: Maddie Kate laughed for the first time today! I had her sitting in her Bumbo seat and we were playing patty cake when it happened. So cute! I wish Austin could have been there to see it.
I guess that is all for now.
We go Thursday for an appointment with Infectious Disease. We decided to take Maddie off the valganciclover because the drug is still relatively new and not enough studies have been done to prove that there is no cancer risk in humans. I just don't want to take the chance. Also Maddie has an appointment on Friday to get her hearing aids. I am anxious to see how she does with them! Also, we found out yesterday that she is going to have to have a liver biopsy next week because her liver enzymes are not improving. I guess they just want to be on the safe side and make sure nothing serious is going on.
Other firsts: Maddie Kate laughed for the first time today! I had her sitting in her Bumbo seat and we were playing patty cake when it happened. So cute! I wish Austin could have been there to see it.
I guess that is all for now.
Monday, November 14, 2011
Well...
...I guess I jinxed it. Maddie not only did not sleep through the night last night, she didn't even sleep 6 hours straight! I think that is because she slept so much during the day yesterday. Maddie is not usually a great napper, but she took 3 really long naps yesterday. The last one lasted over 3 hours! We'll try to get her to sleep through the night again tonight. We'll see what happens.
Sunday, November 13, 2011
Sleeping Through the Night!
I don't want to jinx it, but I would say that Maddie Kate is officially sleeping through the night! Last night she went down somewhere between 8 and 9. She woke up at 2, but I was able to give her pacifier to her and she went back to sleep until 5 am! She ate for maybe 5 min at 5 am and then was asleep until after 7. Hopefully we have a repeat of that tonight. I've tried dropping her early morning feed by using her pacifier before, but it hasn't worked until now.
Austin has been working a lot lately. We figured out that he was only home 3 nights this past week. One of those he went straight to bed and another 1 we used to drive to Memphis to get a buffet we found on Craigs List. So until tonight, we have basically only had 1 night home as a family. It has been crazy and very exhausting for both of us. I told Austin that I have felt like a single mother this past week. He is on vacation for the next week and we will be heading to Nashville to my dad's on Tuesday night to stay for a few days. We originally were going to go somewhere like Hot Springs, AR or the Biltmore, but it didn't work out. We just figured it would be too soon for Maddie Kate to travel that far. So we decided to just vacation in Nashville. It's not much of a getaway for dad and Darlene, but at least they are off work! We will probably plan on seeing the Christmas lights at Opryland and the new Madagascar ice exhibit. I think dad and Austin will probably go fly fishing one day. And we may take Abby to see The Lion King in 3D one day.
Austin has been working a lot lately. We figured out that he was only home 3 nights this past week. One of those he went straight to bed and another 1 we used to drive to Memphis to get a buffet we found on Craigs List. So until tonight, we have basically only had 1 night home as a family. It has been crazy and very exhausting for both of us. I told Austin that I have felt like a single mother this past week. He is on vacation for the next week and we will be heading to Nashville to my dad's on Tuesday night to stay for a few days. We originally were going to go somewhere like Hot Springs, AR or the Biltmore, but it didn't work out. We just figured it would be too soon for Maddie Kate to travel that far. So we decided to just vacation in Nashville. It's not much of a getaway for dad and Darlene, but at least they are off work! We will probably plan on seeing the Christmas lights at Opryland and the new Madagascar ice exhibit. I think dad and Austin will probably go fly fishing one day. And we may take Abby to see The Lion King in 3D one day.
Friday, November 11, 2011
Update 11/11/11
Hello all. Sorry it has been two weeks since I last updated. Madelyn's doing well. She has her good days and her bad days. Today has been a good day so far. She has followed her schedule pretty much to a tee and has slept and ate well. Tuesday was a bad day...she probably only napped for an hour or so all day. Madelyn is still rolling over from front to back. She did it consistently for about 4 days this past week, but she hasn't done it at all the past day or two. Maddie also is smiling consistently now in response to faces. She coos some too although it doesn't seem to be in response to any faces. She has also started to bat at objects hanging near her. You wouldn't know that she was deaf. She acts like any other baby...she just doesn't react to sounds.
Other news, we went to the pediatrician last thursday 11/3/11 for Maddie Kate's two week checkup. She is right on track and is around the 20th percentile for height, weight, and head circumference. He said she looked perfect! Maddie was not happy when we left that day because she had to have more blood drawn as well as get three shots in her legs for her immunizations.
We met with our teacher for the first time on Tuesday. She seemed really nice, however she did not know sign language. We were told that our teacher was supposed to teach us sign language, but how is she supposed to do that if she doesn't even know it. She says she is supposed to take a sign language course, but I could probably learn it just as fast on my own using the internet!
Abby is doing well. I try to make sure she has some one-on-one time with mommy every day so that she doesn't get jealous. She likes Maddie Kate but is only interested in her some of the time. Abby is enjoying mother's day out twice a week. They are currently working on Christmas songs for a Christmas program they are doing this year. I can't wait! One of the songs they are singing is Jingle Bells which Abby calls Jima Bells. They are also singing "We Wish You a Merry Christmas", "Away In a Manger", and "Go Tell it on the Mountain." I can't wait! She is going to be so cute!
Other news, we went to the pediatrician last thursday 11/3/11 for Maddie Kate's two week checkup. She is right on track and is around the 20th percentile for height, weight, and head circumference. He said she looked perfect! Maddie was not happy when we left that day because she had to have more blood drawn as well as get three shots in her legs for her immunizations.
We met with our teacher for the first time on Tuesday. She seemed really nice, however she did not know sign language. We were told that our teacher was supposed to teach us sign language, but how is she supposed to do that if she doesn't even know it. She says she is supposed to take a sign language course, but I could probably learn it just as fast on my own using the internet!
Abby is doing well. I try to make sure she has some one-on-one time with mommy every day so that she doesn't get jealous. She likes Maddie Kate but is only interested in her some of the time. Abby is enjoying mother's day out twice a week. They are currently working on Christmas songs for a Christmas program they are doing this year. I can't wait! One of the songs they are singing is Jingle Bells which Abby calls Jima Bells. They are also singing "We Wish You a Merry Christmas", "Away In a Manger", and "Go Tell it on the Mountain." I can't wait! She is going to be so cute!
Friday, October 28, 2011
Update 10/28/11
Don't believe me when I say I'm going to update the same day I guess. Madelyn's doc appointment was fine on Wednesday. No new news. The doc thought her skin and eyes looked less yellow but drew more blood to verify levels. She wants her to continue her medicine until her bilirubin levels are completely back to normal. We don't have to have another visit with her for 2 more months. I also asked her about the risks of taking valganciclover and she said that Madelyn should be fine. The studies I was worried about talked about fertility and cancer issues in lab rats, but the doc said they give them an extremely high dose of the medicine, far higher than we would ever give a human. In fact, cancer is shown in many studies of drugs on animals for that very reason.
Other than that, Madelyn is doing good. She is only waking up once a night to eat now, finally! She is on a pretty good schedule. She is a touchy baby, however, and has a hard time falling to sleep if her schedule isn't followed just right. Hopefully she will grow out of that soon. I'm just glad to be getting some sleep in the meantime.
Other than that, Madelyn is doing good. She is only waking up once a night to eat now, finally! She is on a pretty good schedule. She is a touchy baby, however, and has a hard time falling to sleep if her schedule isn't followed just right. Hopefully she will grow out of that soon. I'm just glad to be getting some sleep in the meantime.
Wednesday, October 26, 2011
Update 10/26/11
Last week Maddie Kate had two doctor appointments. The first appointment was with infectious disease. We decided in that appointment to continue Madelyn's treatment with ganciclover through 6 months of age. There is an unpublished study that shows possible benefits in reducing developmental delays with prolonged treatment. For now we are continuing the treatment but I do have a few more questions about the drug that I want to discuss at our next doctors treatment. I just want to make sure that there are no serious side effects with long term use of the drug.
The second appointment was for a hearing aid fitting for Maddie Kate. The hearing aids fit around the ear and then have a little mold that fits in the ear. We chose clear molds but a pink hearing aid for her.
She is going to be so stylish! Because TEIS (Tennessee Early Intervention Service) is paying for the hearing aids, it could take several months for them to come in. In the meantime, Vanderbilt will provide loaner hearing aids for Maddie. We will probably have to come back in a couple of weeks once Maddie's molds come in and get the loaner hearing aid. She will then have to have new impressions taken since her ears are growing so fast. In fact she will have to have new impressions taken every time she goes in to get new molds which will be about every 3 - 4 weeks.
Today we have an appointment with the GI doc. I will let you know how that goes later on today hopefully.
The second appointment was for a hearing aid fitting for Maddie Kate. The hearing aids fit around the ear and then have a little mold that fits in the ear. We chose clear molds but a pink hearing aid for her.
She is going to be so stylish! Because TEIS (Tennessee Early Intervention Service) is paying for the hearing aids, it could take several months for them to come in. In the meantime, Vanderbilt will provide loaner hearing aids for Maddie. We will probably have to come back in a couple of weeks once Maddie's molds come in and get the loaner hearing aid. She will then have to have new impressions taken since her ears are growing so fast. In fact she will have to have new impressions taken every time she goes in to get new molds which will be about every 3 - 4 weeks.
Today we have an appointment with the GI doc. I will let you know how that goes later on today hopefully.
Monday, October 17, 2011
Maddie Kate rolled over!
Just wanted to let y'all know that Maddie Kate rolled from front to back two times last night during tummy time right before her bath. She was really unhappy about tummy time so I think she just got mad enough to roll over! I haven't been able to get her to do it today though.
Sunday, October 9, 2011
Update 10/9/11
Hey all. A lot of people have been wondering how we are doing and wanting an update. We are doing well right now. Things are relatively normal around here. Maddie Kate acts like a very normal baby. She has been going through a little bit of a colicky phase lately and has been very fussy in the early evening hours. She usually calms though after her late evening feeding and sleeps very well at night. She of course still wakes to eat, but then she goes right back to sleep. I remember Abby going through this phase as well. From everything I've read, it is just a phase and she will grow out of it. Abby is actually doing really well with Maddie Kate...even when Maddie is being fussy. It's funny because I thought Abby would be jealous if I was having to hold Madelyn a lot to get her to stop fussing, but she's not. In fact, if Maddie Kate is crying and I'm not holding her, Abby makes sure I know that Maddie Kate is crying and I need to hold her and get her to stop. She does not like Maddie Kate crying at all. She will scream at Maddie Kate over her cries, "MADDIE KATE! IT'S OKAY! YOU'RE OKAY MADDIE KATE!"
We had Madelyn's blood drawn on Wednesday. I had Austin look on the computer for the results. Her neutrofil count was up to 3500 from where it was at 930 the week before. That means being off the IV ganciclover has helped. Also her bilirubin was down to 6.9 from 8.0 and her liver enzymes were also down by at least half. This is all good news. Madelyn is currently on three different medicines. One is the oral ganciclover, the second is a vitamin, and the third is called ursodiol which is what is helping her liver enzymes drop.
Friday I met with a representive from TEIS (Tennessee's Early Intervention System). This is an early intervention system through the department of education that helps prepare at risk children for school. Because of Madelyn's hearing impairment, she qualifies for this service. A teacher will come out once a week and work with Maddie Kate on developmental skills, even as a baby, and will also work with Abby and I on sign language. We are lucky to live in Jackson which has one of the only two schools for the deaf in the state of Tennessee (the other one is in Knoxville). The teacher will submit reports to the WTSD (West Tennessee School for the Deaf) and when they feel Maddie Kate is ready, they will have her start attending classes there. She will start there no later than age two. Abby and I will also be able to go there to learn sign language. Madelyn will need this service even if she gets cochlear implants because the hearing is not as good and is not the same with the implants. She may need to do some signing still in order to communicate. I guess that is all for now!
We had Madelyn's blood drawn on Wednesday. I had Austin look on the computer for the results. Her neutrofil count was up to 3500 from where it was at 930 the week before. That means being off the IV ganciclover has helped. Also her bilirubin was down to 6.9 from 8.0 and her liver enzymes were also down by at least half. This is all good news. Madelyn is currently on three different medicines. One is the oral ganciclover, the second is a vitamin, and the third is called ursodiol which is what is helping her liver enzymes drop.
Friday I met with a representive from TEIS (Tennessee's Early Intervention System). This is an early intervention system through the department of education that helps prepare at risk children for school. Because of Madelyn's hearing impairment, she qualifies for this service. A teacher will come out once a week and work with Maddie Kate on developmental skills, even as a baby, and will also work with Abby and I on sign language. We are lucky to live in Jackson which has one of the only two schools for the deaf in the state of Tennessee (the other one is in Knoxville). The teacher will submit reports to the WTSD (West Tennessee School for the Deaf) and when they feel Maddie Kate is ready, they will have her start attending classes there. She will start there no later than age two. Abby and I will also be able to go there to learn sign language. Madelyn will need this service even if she gets cochlear implants because the hearing is not as good and is not the same with the implants. She may need to do some signing still in order to communicate. I guess that is all for now!
Saturday, October 8, 2011
Thursday, September 29, 2011
Update 9/29/11
Well Maddie Kate will be 4 weeks old tomorrow. Can you believe it? Time sure has flown by. Well we have a lot to update today so this will be a long blog. Bear with me.
On Tuesday 9/27 Maddie Kate had two appointments. Her first appointment that day was with Infectious Disease (or ID). What we found out from ID is that her neutrofil count (which is the part of her white cells that fight infections I believe) has dropped. Her count was 1064 and they didn't want it to get below 1000. So what they decided was to see what her neutrofil count (or ANC) was on her next set of labs to determine the next steps. If her ANC had dropped again, they would have us discontinue the IV form of ganciclover and switch to an oral form. The oral form is called Valganciclover and does not get absorbed into the blood as readily as does the IV form of the medication. Because of this, her ANC should recover as her blood isn't receiving as high of a dose. If it doesn't recover, they will stop treatment altogether until it does recover and then may or may not continue treatment.
I received a call from ID today stating that her ANC had dropped to 930 from the labs drawn yesterday and so they are going to remove her PICC line and switch her to Valganciclover (orally). The home health nurse is going to come by at some point tomorrow with a colleague of hers to remove the PICC line and I am going to pick up my prescription for the oral medication tomorrow. I will have to give it to her 2 times per day just like the IV form of the medicine. She will continue on the oral form for the remaining 2 weeks of treatment and potentially longer if they feel it will help. One of the ID doctors provided us an article on the effectiveness of treatment with Valganciclover, but I have not had a chance to read it yet. We will follow up with ID at Vanderbilt in 3 weeks on 10/20/11.
Also on Tuesday 9/27, Maddie Kate had an appointment with opthamology. Her exam was perfectly normal and the doctor does not need to see her again unless for some reason ID thinks she needs another eye exam. So yeah! One less doctor to see!
On Wednesday 9/28, we had 2 more appointments. One for audiology and the other was for the GI/liver doctor. Her ABR exam with audiology showed that Maddie Kate cannot hear out of either ear. Her exact diagnosis is Bilateral Profound Sensorineural Hearing Loss (google it). She had hardly any brain response to the highest level of sound the test could do which was 95 decibals (as loud as a jackhammer). Here is some general information I copied and pasted from a website about her hearing loss:
Bilateral means that both ears have a hearing loss.
Profound means that the hearing loss is 90dB or greater. This means that the child may not be able to
hear anything softer than 90dB.
Sensorineural means that the cochlea or auditory nerve isn't working correctly.
A child with this much hearing loss may not be able to hear much, even with hearing aids. So he may
not be able to learn to speak through hearing alone. He may benefit from using sign language and by
reading lips. He may also be a candidate for a cochlear implant.
We will return to the audiology clinic in 3 weeks (also on 10/20) to have Maddie Kate fitted with hearing aids. She will not be able to understand spoken words with this but may be able to hear some very loud sounds with it. We plan on having her receive a cochlear implant, but she will not be able to receive one until she is 1 year of age per the FDA. The hearing aid serves two purposes. One is it will hopefully allow Maddie to hear some sounds so that her nerves continue firing responses to the brain and not sit idle for the next year while we wait on the implant. And two, before insurance will pay for the cochlear implant, they require proof that the hearing aids didn't "do the trick."
When Maddie Kate does get the implant, she will need extensive speech therapy to help her translate what she is hearing to words as well as to catch up with her peers. I asked the audiologist if she would be able to hear normally after the implant. Her reply was that yes she would but that it may be the low end of normal. Many children after having the implant are mainstreamed by kindergarten meaning they are ready to join their peers like a normal child by kindergarten. With us catching it so early and with me being able to stay home and work with her on a daily basis, we have no doubt that we can get Maddie Kate to this level by kindergarten.
Finally Maddie Kate saw the GI (gastrointerologist) doc yesterday afternoon. The GI doc said that her bilirubin was still elevated being at 5.7 but that it was steadily going down which was a good thing. She would like it to be around 1 (or 3 is okay while she is breastfeeding). She expects it to return to normal levels in the next month. Maddie's liver enzymes are also elevated which the GI doc said could remain elevated and could fluctuate over the next year or even longer as Maddie's body works on suppressing the virus. So thus far everything looks right on track for where she expects Maddie to be right now. We will see her again on 11/9/11.
Austin and I are handling the news just fine. We new that hearing loss or deafness was definitely a possibility. The news is disappointing, but is something that we can deal with. We are very blessed to have a wonderful support group with our family and friends and to have the means for me to stay home with our children. There are so many worse things that could have happened with a CMV infection so if hearing loss is all we have, then we are pretty lucky. Please continue to pray for us as I'm sure this next year will be very trying. As I look back on our lives thus far, I can see how God has helped prepare us for this time. For example, I decided to become a teacher and taught for 5 years in inclusion classes that included students with special needs, Austin decided to become a physician, and the fact that we made the decision for me to stay home this year instead of returning to work. I believe God led us down these paths so that we would be able to give the best care to Maddie Kate as possible.
Jessica
On Tuesday 9/27 Maddie Kate had two appointments. Her first appointment that day was with Infectious Disease (or ID). What we found out from ID is that her neutrofil count (which is the part of her white cells that fight infections I believe) has dropped. Her count was 1064 and they didn't want it to get below 1000. So what they decided was to see what her neutrofil count (or ANC) was on her next set of labs to determine the next steps. If her ANC had dropped again, they would have us discontinue the IV form of ganciclover and switch to an oral form. The oral form is called Valganciclover and does not get absorbed into the blood as readily as does the IV form of the medication. Because of this, her ANC should recover as her blood isn't receiving as high of a dose. If it doesn't recover, they will stop treatment altogether until it does recover and then may or may not continue treatment.
I received a call from ID today stating that her ANC had dropped to 930 from the labs drawn yesterday and so they are going to remove her PICC line and switch her to Valganciclover (orally). The home health nurse is going to come by at some point tomorrow with a colleague of hers to remove the PICC line and I am going to pick up my prescription for the oral medication tomorrow. I will have to give it to her 2 times per day just like the IV form of the medicine. She will continue on the oral form for the remaining 2 weeks of treatment and potentially longer if they feel it will help. One of the ID doctors provided us an article on the effectiveness of treatment with Valganciclover, but I have not had a chance to read it yet. We will follow up with ID at Vanderbilt in 3 weeks on 10/20/11.
Also on Tuesday 9/27, Maddie Kate had an appointment with opthamology. Her exam was perfectly normal and the doctor does not need to see her again unless for some reason ID thinks she needs another eye exam. So yeah! One less doctor to see!
On Wednesday 9/28, we had 2 more appointments. One for audiology and the other was for the GI/liver doctor. Her ABR exam with audiology showed that Maddie Kate cannot hear out of either ear. Her exact diagnosis is Bilateral Profound Sensorineural Hearing Loss (google it). She had hardly any brain response to the highest level of sound the test could do which was 95 decibals (as loud as a jackhammer). Here is some general information I copied and pasted from a website about her hearing loss:
Bilateral means that both ears have a hearing loss.
Profound means that the hearing loss is 90dB or greater. This means that the child may not be able to
hear anything softer than 90dB.
Sensorineural means that the cochlea or auditory nerve isn't working correctly.
A child with this much hearing loss may not be able to hear much, even with hearing aids. So he may
not be able to learn to speak through hearing alone. He may benefit from using sign language and by
reading lips. He may also be a candidate for a cochlear implant.
We will return to the audiology clinic in 3 weeks (also on 10/20) to have Maddie Kate fitted with hearing aids. She will not be able to understand spoken words with this but may be able to hear some very loud sounds with it. We plan on having her receive a cochlear implant, but she will not be able to receive one until she is 1 year of age per the FDA. The hearing aid serves two purposes. One is it will hopefully allow Maddie to hear some sounds so that her nerves continue firing responses to the brain and not sit idle for the next year while we wait on the implant. And two, before insurance will pay for the cochlear implant, they require proof that the hearing aids didn't "do the trick."
When Maddie Kate does get the implant, she will need extensive speech therapy to help her translate what she is hearing to words as well as to catch up with her peers. I asked the audiologist if she would be able to hear normally after the implant. Her reply was that yes she would but that it may be the low end of normal. Many children after having the implant are mainstreamed by kindergarten meaning they are ready to join their peers like a normal child by kindergarten. With us catching it so early and with me being able to stay home and work with her on a daily basis, we have no doubt that we can get Maddie Kate to this level by kindergarten.
Finally Maddie Kate saw the GI (gastrointerologist) doc yesterday afternoon. The GI doc said that her bilirubin was still elevated being at 5.7 but that it was steadily going down which was a good thing. She would like it to be around 1 (or 3 is okay while she is breastfeeding). She expects it to return to normal levels in the next month. Maddie's liver enzymes are also elevated which the GI doc said could remain elevated and could fluctuate over the next year or even longer as Maddie's body works on suppressing the virus. So thus far everything looks right on track for where she expects Maddie to be right now. We will see her again on 11/9/11.
Austin and I are handling the news just fine. We new that hearing loss or deafness was definitely a possibility. The news is disappointing, but is something that we can deal with. We are very blessed to have a wonderful support group with our family and friends and to have the means for me to stay home with our children. There are so many worse things that could have happened with a CMV infection so if hearing loss is all we have, then we are pretty lucky. Please continue to pray for us as I'm sure this next year will be very trying. As I look back on our lives thus far, I can see how God has helped prepare us for this time. For example, I decided to become a teacher and taught for 5 years in inclusion classes that included students with special needs, Austin decided to become a physician, and the fact that we made the decision for me to stay home this year instead of returning to work. I believe God led us down these paths so that we would be able to give the best care to Maddie Kate as possible.
Jessica
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