We took Rylee to her Growth Hormone testing. Her blood pressure dropped to 50s over 20s. That’s the lowest it got, which was low enough! It took about 4 hours. She was pretty much zonked through the entire thing. On Tuesday, after much badgering, I got the test results. She passed. This was a test that we desperately wanted her to fail. I thought, prayed rather, that this Growth Hormone deficiency was going to be it. It was going to be the diagnosis that we had been waiting for. But she passed meaning that’s not it. To say that I was bummed to highest level on Tuesday is an understatement. So it’s back to the drawing board. We had to take Wes to see Dr. Ashley on Wednesday and she pulled Dr. Connolly in to look into his ears. We discussed the results a little while he was in with us. He thinks that she may quite possibly have some form of dwarfism. It could possibly be the Chromosome deletion. It could be a lot of things. So we discuss this more at length on Thursday when we take Wes back again for his 4 month well child appointment. Diane Eastman, Rylee’s nurse practitioner from UIHC, called me yesterday. She desperately wants Rylee in to have her heart and kidneys looked at. I was trying to steer away from Iowa City because of the drive but I guess it’s not much longer than going to Madison from our house. Rylee’s innocent heart murmur may not be so innocent after all. Her enlarged kidneys could be the problem. I hope going down there we can figure out what is causing this “failure to thrive”. She is officially considered a “failure to thrive” child because her growth is less than 2 lbs and 2 inches of growth in 1 year. In the last 12 months, she has only gained 10 oz and grew 1 5/8 inches. I want to discuss the possibility of the Mayo Clinic with Dr. Connolly. I think it is time to quit messing around and just head up there. If he doesn’t think so, I do. And I am mom so I win! I am at my wits end really. I just don't know what to do anymore.
Runny noses is the race around our house. We can’t get Wes and Rylee’s to quit! Poor Wes had an ear infection in November and again in the beginning of this month. This poor child has been following in his big brother’s footsteps, through and through. He has also developed a wheezy cough that Amoxicillin didn’t kick, neither did Omnicef so he has Prednisone to his regimen. He is taking Omnicef, Prednisone and Albuterol by nebulizer everyday. Hopefully, when we see Dr. Connolly next week, this is all cleared up.
Last Sunday night, Kristopher took Troy to see a Canadian Pacific train come stop in Dubuque. It was all lit up in lights and they had performers and music. He had a blast. The only downsides were that it was late, 9:30 pm, and bitterly cold out. They stayed for about a half hour and then came home. He was so excited to tell me about it. He even talked about it with his babysitter for a couple of days. He knew all the colors of the lights. He’s growing up before our eyes! He says some of the funniest things and we have the most interesting conversations. He’s hugely into trains and dinosaurs.
This weekend is a big one for us. Tomorrow my baby brother graduates from college and is having a little open house at my dad’s afterwards. I am excited to cheer him on. I have to pick his girlfriend up at 1 and we will take our seats (yes, there is assigned seating!). Do you all remember the scrawny little guy? Now he is a bulky, muscular, tall guy. He’s no longer my “little” brother…he’s my little but BIG brother! Congrats Scotty!
Next Monday, we are off to the GI doctor and Thursday to see Dr. Connolly. Eventually we will go a week with out a doctor visit…I hope!
Friday, December 10, 2010
Friday, November 26, 2010
Happy Thanksgiving
Well, it official. My sisters, sister-in-law and I are NUTS. Down right crazy. We braved the crowds and went black friday shopping at WalMart's 12:01 am sale. I got a few things but my favorite is the bicycle for Troy for his birthday. I am so excited about that! I do have to say that people are down right crazy. Oh man. Erin decided that she would like something to eat and a quick McDonald's drive thru turned into a rediculous 30 minute wait. Then about half way home, we almost hit a herd of cows, literally by the hair on my chinny chin chin. I got to bed at 3:30 am and was up at 7, needless to say I am tired.
Thanksgiving is usually a low key holiday for us. This year, I made the whole dinner and all then later we went over to my dad's and ate some more! I made a traditional Thanksgiving dinner. The sage and garlic turkey,sausage stuffing, mashed potatoes, corn, green bean casserole and dinner rolls. We had pumpkin pie loaded with Cool Whip for dessert. It was fantastic. Rylee loved it. Troy broke out in hives from who knows what (a little benadryl and he was fixed). We went around the table and said what we were thankful for. Troy said "peanut butter sandwich", haha, it's been his favorite lately. This is a photo of my scrumptious turkey.
It's been a while since I posted about what has been happening in our family. Rylee's big testing is coming up, Tues Nov 30th. They are testing her for Growth Hormone Deficiency. We will then discuss why this is, what the treatment is, who we see next...those kinds of questions. Then Dec 1st, I have been subpoenaed to court. First time I have ever been to court and I HAVE to be there. In August 2008, I became a Notary Public. I am bonded and all. In October 2009, I had a family come in and I notarized a will. Now, after a death, there is a controversy over that will and I am the main witness. That darn Notary. Since then I have been much more leery of what I am notarizing. I am nervous as all get out. I have to make it through Rylee's testing first and pray to the high heavens that nothing goes wrong at that appointment. That attorney does know that she has this big testing and there is always a possibility of something going wrong, especially with Rylee and her "damaged" organs.
Lately, I have been crafty. A while ago, when I started making Halloween costumes, I got fabric to make Christmas stockings for our family. I finally got them made. They are so darn cute. I spent $16.95 to make those. I already had the interfacing so I just had to buy the fabric. I still have to put our names on them but I think I am just going to get those iron on sheets and print them on. So for about $3.50 each, we each has personalized, custom stockings, can't beat that!
Last weekend, I decided to make an apron because I don't have one. It turned out so cute! I had so much material left over, that I decided to attempt to make Rylee a dress. It's a pillowcase dress and it's so cute. I just love it. She looks adorable in it though I didn't get any pictures of her wearing it. It cost me just under $10 for the 2 yards of material and I still have quite a bit left over. So for $10, I got an apron and an infant sized dress.
2 weeks ago, I spent my sunday at the sewing maching and made 1 panel for the kids bedroom window. I have 3 more to make for their room and 4 for ours. I couldn't stomach spending the $10 per yard for the fabric I wanted for the kids room. I wanted something colorful yet still go with the grayish, silvery paint we got to paint their room. I found those most adorable fabric for our room and there again I couldn't spend that much money just for curtains. The designer fabric was 30% off so I got them for about $7 per yard. So instead of getting the 10 yards that I needed (2.5 yards per window), I got 4 yards of the designer ($7/yard x 4 yards = $28) and 6 yards of muslin ($1.39/yard x6 yards = $8.34 for a total of $36.34 for 8 panels to cover 4 windows...not bad!). I had a picture in my head of how to would turn out. It looked awesome. Now that I have my pattern down from making the first one, I need to get crackin' on the other 7, ugh. And we need to get those rooms painted.
I also made curtains for my kitchen sink window and a valence for the dining room window to match. Cute right? I made both of those for about $7.
I also made a WI Badger wreath. The tulle cost me $6, the styrofoam wreath $3 and the "W" for $1 for a total of $10. I decided that I needed to make a wreath hanger to go with so for $7 I made one.
I also made this twined "K". The twine was $2 and the letter K was $1 for a total of $3.
I made these jars. I spent about $2 per jar, used the same roll of twine from the letter K above, $1 each for the finials, $1 each for the spinals and $.50 for each of round bases for a total of $13. (I still have to attach the bottoms to the jars but one of the jars are bubbled so I am trying to figure out how I am going to do that.) I got the rocks from the dollar store so $2 there.
I had so much fun but I think I am taking a break from crafting for a bit. I need to get our bedrooms painted and curtains made and hung. I am excited to see the finished project. It's on my too do BEFORE christmas. I got the ideas of the twined K, Apothecary jars and wreath hanger from Shanty2Chic. Right now they have not 1 but 2 giveaways that I am excited about. The first giveaway you'll see is for Gorilla glue. That stuff is amazing. They have some great epoxy glue. The other giveaway, I will extremely heartbroken if I don't win, is for a Silhouette Machine. Oh my goodness, I want one of those really really really bad. It would make my crafting so much easier. You probably ask, why the Silhouette versus a Cricut? Because, you get patterns and such online for $.99 I believe for the Silhouette versus the Cricut cartridges for $60+.
Here are a few more overdue photos. My little Weston is not so little anymore. He is battling a cold right now and just got over a nasty ear infection.
Thanksgiving is usually a low key holiday for us. This year, I made the whole dinner and all then later we went over to my dad's and ate some more! I made a traditional Thanksgiving dinner. The sage and garlic turkey,sausage stuffing, mashed potatoes, corn, green bean casserole and dinner rolls. We had pumpkin pie loaded with Cool Whip for dessert. It was fantastic. Rylee loved it. Troy broke out in hives from who knows what (a little benadryl and he was fixed). We went around the table and said what we were thankful for. Troy said "peanut butter sandwich", haha, it's been his favorite lately. This is a photo of my scrumptious turkey.
It's been a while since I posted about what has been happening in our family. Rylee's big testing is coming up, Tues Nov 30th. They are testing her for Growth Hormone Deficiency. We will then discuss why this is, what the treatment is, who we see next...those kinds of questions. Then Dec 1st, I have been subpoenaed to court. First time I have ever been to court and I HAVE to be there. In August 2008, I became a Notary Public. I am bonded and all. In October 2009, I had a family come in and I notarized a will. Now, after a death, there is a controversy over that will and I am the main witness. That darn Notary. Since then I have been much more leery of what I am notarizing. I am nervous as all get out. I have to make it through Rylee's testing first and pray to the high heavens that nothing goes wrong at that appointment. That attorney does know that she has this big testing and there is always a possibility of something going wrong, especially with Rylee and her "damaged" organs.
Lately, I have been crafty. A while ago, when I started making Halloween costumes, I got fabric to make Christmas stockings for our family. I finally got them made. They are so darn cute. I spent $16.95 to make those. I already had the interfacing so I just had to buy the fabric. I still have to put our names on them but I think I am just going to get those iron on sheets and print them on. So for about $3.50 each, we each has personalized, custom stockings, can't beat that!
Troy and Kristopher's stockings
Rylee and my stockings
Weston's stocking
Last weekend, I decided to make an apron because I don't have one. It turned out so cute! I had so much material left over, that I decided to attempt to make Rylee a dress. It's a pillowcase dress and it's so cute. I just love it. She looks adorable in it though I didn't get any pictures of her wearing it. It cost me just under $10 for the 2 yards of material and I still have quite a bit left over. So for $10, I got an apron and an infant sized dress.
2 weeks ago, I spent my sunday at the sewing maching and made 1 panel for the kids bedroom window. I have 3 more to make for their room and 4 for ours. I couldn't stomach spending the $10 per yard for the fabric I wanted for the kids room. I wanted something colorful yet still go with the grayish, silvery paint we got to paint their room. I found those most adorable fabric for our room and there again I couldn't spend that much money just for curtains. The designer fabric was 30% off so I got them for about $7 per yard. So instead of getting the 10 yards that I needed (2.5 yards per window), I got 4 yards of the designer ($7/yard x 4 yards = $28) and 6 yards of muslin ($1.39/yard x6 yards = $8.34 for a total of $36.34 for 8 panels to cover 4 windows...not bad!). I had a picture in my head of how to would turn out. It looked awesome. Now that I have my pattern down from making the first one, I need to get crackin' on the other 7, ugh. And we need to get those rooms painted.
I also made curtains for my kitchen sink window and a valence for the dining room window to match. Cute right? I made both of those for about $7.
I also made a WI Badger wreath. The tulle cost me $6, the styrofoam wreath $3 and the "W" for $1 for a total of $10. I decided that I needed to make a wreath hanger to go with so for $7 I made one.
I also made this twined "K". The twine was $2 and the letter K was $1 for a total of $3.
I made these jars. I spent about $2 per jar, used the same roll of twine from the letter K above, $1 each for the finials, $1 each for the spinals and $.50 for each of round bases for a total of $13. (I still have to attach the bottoms to the jars but one of the jars are bubbled so I am trying to figure out how I am going to do that.) I got the rocks from the dollar store so $2 there.
I had so much fun but I think I am taking a break from crafting for a bit. I need to get our bedrooms painted and curtains made and hung. I am excited to see the finished project. It's on my too do BEFORE christmas. I got the ideas of the twined K, Apothecary jars and wreath hanger from Shanty2Chic. Right now they have not 1 but 2 giveaways that I am excited about. The first giveaway you'll see is for Gorilla glue. That stuff is amazing. They have some great epoxy glue. The other giveaway, I will extremely heartbroken if I don't win, is for a Silhouette Machine. Oh my goodness, I want one of those really really really bad. It would make my crafting so much easier. You probably ask, why the Silhouette versus a Cricut? Because, you get patterns and such online for $.99 I believe for the Silhouette versus the Cricut cartridges for $60+.
Here are a few more overdue photos. My little Weston is not so little anymore. He is battling a cold right now and just got over a nasty ear infection.
Wednesday, November 17, 2010
Our Journey with a Preemie Princess
Last year, I wrote this post for Premature Awareness Month Bloggers Unite event on November 17, 2009. In the last year, we've been busy. We successfully made it through RSV, cold and flu season without any major illnesses. In February 2010, I found out that I was pregnant...again, due September 8, 2010. This pregnancy was a rough one. I had major morning sickness, achiness, Braxton Hicks since week 13...I was just miserable the entire time! In April 2010, Rylee started seeing a GI doctor and nutritionist monthly. We have tried many different diets and medications. So far, since February Rylee has gained 1 lb. In the end of July, Rylee started vomiting again. Her GI doctor and nutritionist decided that it would be best to have her head measured. I rushed her to the local clinic at closing time, had her head measured and sent off to the Children's Hospital in Madison. By 9 am the following morning, they had reviewed it and called. They wanted her there right away to have a brain scan done. The scan showed that her shunt had indeed quit working. She was scheduled for the surgery the following morning, July 30th. It went well and we were able to come home the 31st. On August 2nd, I went to work like any other Monday morning. I had contractions all day but chalked it up to those Braxton Hicks. I had a regular 34 week OB appointment at 3:30 pm. I got in the car and started to the clinic, which takes 35 minutes to get there, when those contractions started to hurt a little. I told the nurse when I got there and got this look like "you are not in labor!" I was doing a doctor rotation so a new doctor whom I had never seen before came in with her head in my file. She looked at me and said "oh my gosh, ok...how long have you been shaking?" She called an ambulance to take me to the hospital since I was no longer in any shape to drive and I was 3 cm and 90%. Those EMTs, both men, wheeled me out of the clinic on a stretcher through the OB waiting room. I probably scared the daylights out of those waiting expectant moms. I was 5 cm and completely effaced when I got to the hospital. Weston Robert was born 5 weeks, 3 days early. He started grunting with each breath and had some trouble catching on to eating. He spent 19 days in the NICU. 5 days after bringing Weston home, I noticed that an incision from Rylee's July surgery was broke open and there was a black something inside of it. The next day, I took her to see Dr. Alison who was extremely upset by this, got us an appointment at the children's hospital for the following morning and instructed us to go to the UW ER if if broke open again, bled or could see the black "thing". As of Monday, we found out that Rylee's shunt was exposed and she needed an entirely new shunt. Dr. Bragg (the new Neurosurgeon) tapped her shunt for infection and instructed us to be back in the morning for surgery. I was extremely nervous that morning. They took her back and it seemed like forever before we got an update. Dr. Bragg came in and said that she had just closed Rylee up and getting ready to clean her off, when the phone rang. It was the lab, saying that Rylee's culture from the shunt tapping the afternoon before had grown out for positive strep coag. So Dr. Bragg, went back into surgery to remove the shunt, place a PICC line, and place an EVD. Rylee was in the Pediatric ICU for 8 days before undergoing another surgery to put a new shunt in. Today, Rylee and Weston are healthy and happy. Weston has completely caught up with his age. Rylee is lagging about 12 months behind. They wear the same sized clothes and diapers. It's like having twins. The last 22 months have been hard. As a mother, my heart has broke many times watching my child go through test after test. Whenever I have a "down" day, I think about her toothy smile, infectious laugh and the mere fact, that truly against all odds, she is here with us. We don't know what her life expectancy is but she will have the best life we can give her.
Too many babies are born early. The cause of Rylee's prematurity is unknown. There are problems with her heart, lungs, kidneys, intestines, brain, feet, hands...could these have been prevented if she was a full term baby? We'll never know. Give a baby a chance, donate to the March of Dimes. Do it for Rylee!
I made a quick little video of Rylee's last 22 months. Enjoy!
Too many babies are born early. The cause of Rylee's prematurity is unknown. There are problems with her heart, lungs, kidneys, intestines, brain, feet, hands...could these have been prevented if she was a full term baby? We'll never know. Give a baby a chance, donate to the March of Dimes. Do it for Rylee!
I made a quick little video of Rylee's last 22 months. Enjoy!
Tuesday, November 9, 2010
Lots of STUFF
Happy Tuesday everyone. It's not so happy for me. Sunday, I woke with a horrible sore throat and terrible head ache. I spent much of Sunday with a fever in bed, sleeping. I woke on Monday, without a fever or headache but still an awfully sore throat. As yesterday progressed, I became feverish, achy body, light headed...so I broke down and called the doctor. I have strep throat. Never have I had such pain in my life. Dr. Alison prescribed me some amoxicillan and wrote me a note to stay out of work today. I took my amoxicillian and went to bed. I woke 12 hours later covered in hives. Apparently I am allergic to amoxicillian. They're going to get me some different antibiotics and steroids for the hives. Glad I wasn't at work today. Right now, I don't have a fever just quite itchy and sore.
Next order of business is the month of November. November is Prematurity Awareness month. Do you remember my post about my little miracle last year? Click here to read it again. November 17th is Prematurity awareness day. I will blog that day with Bloggers Unite about not only Rylee but her little brother Weston too. 1 in 8 babies are born premature, support those babies on November 17th by blogging or donating to the March of Dimes or by simply wearing purple.
Moving on to the holidays. We recently celebrated Halloween. I am not really sure this constitutes as a holiday but boy did Troy have fun. We got all the kids dressed up in their costumes. We went to the assisted living facility that my grandma is at to visit with her. Then we ventured over to my dad's, my aunt and uncle's, and my dad's wife's parents (did you get that? They also are my bosses!). We got home in time for the trick or treating. Rylee, Weston and I stayed home to hand candy out while Kris and Troy went Trick or Treating. I watched from the door as he went to the first house, the lady on the corner. Aren't these the cutest pirates you've ever seen? I am so proud of their costumes. They weren't hard to make but I made them all by myself. They turned out better than I thought. Rylee had a pirate tutu. So cute!
Thanksgiving is right around the corner. This is the 3rd or 4th year that Kris and I have just done Thanksgiving as our little family. I love this. It's a day of deliciousness, cozy house, jammies, great food, family, football and BLACK FRIDAY ADS! I don't exactly have my menu planned out yet but we'll be having the usual turkey, stuffing, mashed potatoes, corn, green bean casserole, pumpkin pie. I love cooking for my family and can't wait until their older. My sons will tell their wives, make that like my mom! HAHA! I have never been one to get up early and do the black friday events. The crowds bug me. But I think I am going to attend this year with my sister, sister-in-law...whoever is going before I work that day. I don't know what I will get if anything but we'll see. I am pretty I went like 5 years ago and didn't get anything, just helped out my sisters.
Speaking of Christmas shopping, had I be on the mend, Kristopher and I are going to go do some Christmas shopping this weekend. I am excited to spend some time with him. He's been wonderful to me, especially the last couple of days. My in-laws are wonderfully taking ALL the kids, so we can have some time away. Plus, Santa needs to get the stuff to our house without children seeing it. Here's a sneak peek into what Santa and Mrs. Klaus (we spell things with Ks around here, not Cs!) plan to pick up on their day out....
Next order of business is the month of November. November is Prematurity Awareness month. Do you remember my post about my little miracle last year? Click here to read it again. November 17th is Prematurity awareness day. I will blog that day with Bloggers Unite about not only Rylee but her little brother Weston too. 1 in 8 babies are born premature, support those babies on November 17th by blogging or donating to the March of Dimes or by simply wearing purple.
Moving on to the holidays. We recently celebrated Halloween. I am not really sure this constitutes as a holiday but boy did Troy have fun. We got all the kids dressed up in their costumes. We went to the assisted living facility that my grandma is at to visit with her. Then we ventured over to my dad's, my aunt and uncle's, and my dad's wife's parents (did you get that? They also are my bosses!). We got home in time for the trick or treating. Rylee, Weston and I stayed home to hand candy out while Kris and Troy went Trick or Treating. I watched from the door as he went to the first house, the lady on the corner. Aren't these the cutest pirates you've ever seen? I am so proud of their costumes. They weren't hard to make but I made them all by myself. They turned out better than I thought. Rylee had a pirate tutu. So cute!
Thanksgiving is right around the corner. This is the 3rd or 4th year that Kris and I have just done Thanksgiving as our little family. I love this. It's a day of deliciousness, cozy house, jammies, great food, family, football and BLACK FRIDAY ADS! I don't exactly have my menu planned out yet but we'll be having the usual turkey, stuffing, mashed potatoes, corn, green bean casserole, pumpkin pie. I love cooking for my family and can't wait until their older. My sons will tell their wives, make that like my mom! HAHA! I have never been one to get up early and do the black friday events. The crowds bug me. But I think I am going to attend this year with my sister, sister-in-law...whoever is going before I work that day. I don't know what I will get if anything but we'll see. I am pretty I went like 5 years ago and didn't get anything, just helped out my sisters.
Speaking of Christmas shopping, had I be on the mend, Kristopher and I are going to go do some Christmas shopping this weekend. I am excited to spend some time with him. He's been wonderful to me, especially the last couple of days. My in-laws are wonderfully taking ALL the kids, so we can have some time away. Plus, Santa needs to get the stuff to our house without children seeing it. Here's a sneak peek into what Santa and Mrs. Klaus (we spell things with Ks around here, not Cs!) plan to pick up on their day out....
Smart Trike for Weston or Rylee, not quite sure which one yet
Train set for Troy - Santa and Mrs. Klaus plan to set this up so it's play ready Christmas morning
We may also be getting our hands on a play kitchen so a shopping cart and play food and dishes may be in order too.
Before Christmas we are in major need to purge purge purge some toys. They are overtaking our home and we can't possible add anymore unless we get rid of some!
It's not going to be a very expensive Christmas but it's going to be a great one. We have much to be thankful of like always. Don't forget about Prematurity Awareness day on November 17th, wear something purple.
Saturday, October 30, 2010
Freakin' Awesome!
Like I said in my last post, we have started cloth diapering Weston and Rylee. My sister in law told me about the system that they use. I looked into it and did a TON of research and we decided to use the same system called Best Bottom Diapers. It's a one size diaper that has inserts that snap inside. Super easy! And perfect for our busy busy family. We put them in disposable for the couple hours they are at daycare everyday but when they are home, they're clothed. We got them from a store in Middleton called Nicki's Diapers. I mean this store is literally stocked FULL of cloth diapers, as well as other baby things. It's a neat store tucked in a neat little strip mall area. We decided primarily to start cloth diapering because of how sensitive their skin is. Then after researching and seeing the cost, how can we afford not too? I spent a little over $200 to get us started. That's 2 to 3 months worth of disposable diapers. So in 3 months, they have completely paid for themselves. We have been doing this for just about a month and love it. Yes it is a little more work but not a ton. We have an extra load of laundry each day but with a family of 5, we have laundry every day anyway. This system works wonders for our busy household. Not to mention, reduces our carbon footprint!We got the following diaper covers for them (we got 2 of the white):
Now over at Nicki's Diapers Blog, they are giving away a brand NEW pattern and the winner gets to choose the color they get...AND I WANT ONE! Isn't this so cute?
Onto other news, we may have a new diagnosis for Rylee! We visited the GI doc on Tuesday. Dr. N wanted to consult with her "superior" ("superior" asshole, he was!) to see what he thought about have her "scoped" and biopsies taken of her bottom stomach and small intestine to test the enzymes and to look her anatomy. This would require her to be put under. The "superior" jerkoff decided that before they do that they should test her thyroid and growth hormone as well as for Celiac Disease and malnourishment. Dr. N said she would call me if any of the test results we abnormal otherwise she would send a letter and see us in a month. She called me on Thursday at work. The Celiac Disease results were not in yet (at Rylee's age, it's not very accurate but they wanted to see what it said anyway, maybe retest at age 3). The rest of the results were in, thyroid is fine, not malnourished BUT her growth hormone was "extremely low, practically non existent." The next step is to see an endocrinologist, Dr N says RIGHT AWAY! Turns out that we will see Dr. Connor on November 10th. It was then or wait until February, nope not doing that! Here's a link I found quick for you to reference and read a little about what it is, causes and treatment: Hypopituitarism. We'll know more November 10th, which is a good day...my niece Lexie turns 7 that day! Pray that this could be the answer to our prayers. Dr. N said, "Mary, I think we found it, maybe we make this sick little girl a little more healthy, put some meat on those tiny bones." I think we are also going to have a meeting with Dr. C and get some kind of weight check schedule set up and overall future plans set up. We can't keep just skipping along, something has to be done. That is what I feel in my heart. I didn't listen to my heart the last time and she ended up with 2 unnecessary surgeries.
Tomorrow is Halloween. We have a ship full of Pirates! They're going to be so stinkin' cute. I made their costumes 100% on my own. Very proud of it. I also made their treat bags. Those a cute too. I'll post pics soon!
Vanilla
Blue Moon
Chunky Monkey
Cookies N Cream
Key Lime Pie
Mint Chocolate Chip
Strawberry Shortcake
Now over at Nicki's Diapers Blog, they are giving away a brand NEW pattern and the winner gets to choose the color they get...AND I WANT ONE! Isn't this so cute?
Onto other news, we may have a new diagnosis for Rylee! We visited the GI doc on Tuesday. Dr. N wanted to consult with her "superior" ("superior" asshole, he was!) to see what he thought about have her "scoped" and biopsies taken of her bottom stomach and small intestine to test the enzymes and to look her anatomy. This would require her to be put under. The "superior" jerkoff decided that before they do that they should test her thyroid and growth hormone as well as for Celiac Disease and malnourishment. Dr. N said she would call me if any of the test results we abnormal otherwise she would send a letter and see us in a month. She called me on Thursday at work. The Celiac Disease results were not in yet (at Rylee's age, it's not very accurate but they wanted to see what it said anyway, maybe retest at age 3). The rest of the results were in, thyroid is fine, not malnourished BUT her growth hormone was "extremely low, practically non existent." The next step is to see an endocrinologist, Dr N says RIGHT AWAY! Turns out that we will see Dr. Connor on November 10th. It was then or wait until February, nope not doing that! Here's a link I found quick for you to reference and read a little about what it is, causes and treatment: Hypopituitarism. We'll know more November 10th, which is a good day...my niece Lexie turns 7 that day! Pray that this could be the answer to our prayers. Dr. N said, "Mary, I think we found it, maybe we make this sick little girl a little more healthy, put some meat on those tiny bones." I think we are also going to have a meeting with Dr. C and get some kind of weight check schedule set up and overall future plans set up. We can't keep just skipping along, something has to be done. That is what I feel in my heart. I didn't listen to my heart the last time and she ended up with 2 unnecessary surgeries.
Tomorrow is Halloween. We have a ship full of Pirates! They're going to be so stinkin' cute. I made their costumes 100% on my own. Very proud of it. I also made their treat bags. Those a cute too. I'll post pics soon!
Sunday, October 24, 2010
We're still alive!
Holy Cow, I haven't posted in a while! We've been fairly well at our house. Weston just got over a cough but other than that we've been fairly healthy. The diaper rash was out of control at our house so we decided to switch to cloth diapers. We cloth diaper Rylee and Weston at home and use disposable when we are out and about or they're going to daycare. We're attempting some potty training again with Troy. He's doing alright but the problem comes when he is playing he doesn't want to stop to go potty so its a fight to get him in. Last night he took off his pullup and ran into bathroom saying "daddy I got a go potty" and he sure did! He will only use the big potty, STANDING UP! So you can imagine what the potty looks like after a day of Troy...YUCK! We took Rylee to visit the neurosurgeon a couple weeks ago. Her weight was 16 lbs, 4 oz! AMAZING. That's up 10 ounces. Since she was in the hospital, she hasn't really wanted Pediasure a lot bunch so we decided to experiment. Rylee hasn't gained any weight since February. At the end of August she was drinking about 24-32 ounces of Pediasure a day by bottle and that was pretty much all she was getting. She wasn't interested in pureed foods. We started to give her more table foods, by the speech therapists request. Mid September we started reducing the Pediasure and supplementing with Vit D milk and giving some table foods like cut cooked veggies and soft meats. Today, Rylee is not longer taking a bottle, drinking solely Vit D and eating table foods at every meal. This girl can eat. She eats more than Troy. She got mad at Kristopher tonight because she ate all of her biscuit and he was going to eat his, so he had to give her another one! She has been using a spoon. It's great! We also took Rylee to the Orthoped doc a couple of weeks ago. This was just to check her Surefits to make sure there were no tight spots or rubbing. There were a couple of spots that had to be popped out a little and he put some Teflon tape in the inside to help make moving a little easier. He said that she absolutely HAD to have shoes. They could not be Robeez, which are moccasin type shoes, because they do not have stability to them. He said tennis shoes. He also said that it didn't matter if we got her Stride Rites or Walmart brand shoes just whatever we could find. HA, that turned out to be harder than we thought. Yesterday, Kristopher took all 3 kids to Walker's in Lancaster where his mom works to look there. They came home with the cutest little white and pink pair of Nike's. She hates them but she'll get used to them. They're hers for a while since she doesn't out grown much very fast. She'll probably wear them out before she outgrows them! I asked the Orthoped doc if these braces will fix the problem or will this be a problem throughout her childhood and teenage years? The pronation of both feet is so severe that it's going to be a lifetime problem. There is nothing they can do to fix it. The braces are there to help but not cure. Rylee's incisions are nice and healed. There is one of her tummy that I don't really like the look of but the Neurosurgeon assured me that it looked fine. Her hair is starting to grow back from the surgeries and the rest of her hair is grossly long and constantly in her eyes. She needs to have her hair to be trimmed for sure! The orange dye is starting to come out but there is definitely still a tint to her blonde hair, she looks more like a strawberry blonde. My hair tends to pick up the red when I have it dyed so it maybe more in the genes. She's pulling herself up to everything! She's doing wonderfully! Weston is growing growing growing. He is 10 lbs, 4 oz. He still has all of his hair. His head control is awesome. And he smiles. True smiles. He gets all fussy and fidgety with Kristopher sometimes and all Kris does is hand him to me and Weston is a whole new kid! I just love him so much and I tell him that all the time. Bedtime tonight is coming early for Troy. He hasn't been a very good boy today. His ears aren't working today and he thinks its fine to pick on his sister and back talk to mom and dad so right now we're all listening to him scream to the high heavens. He's sure persistent, it's been a good 1o minutes. It's football season and we love our Badgers and Packers. Do you know how to Bucky?
Thursday, October 7, 2010
2 of the fastest yet longest months ever
I took Weston to his 2 month check up today. That's right, this past Saturday marked Weston's 2 month "birthday". I can't believe it. I can't believe that he is 2 months old yet it seems like he was born ages ago! His stats at 2 months:
Weight: 10 lbs, 4 oz (5-10th%)
Height: 22.5 inches (25th%)
Head Circum: 14.75 inches (5th%)
I also am proud to announce: I GOT THE FIRST SMILE AND COO! Me...I never get the firsts, that's always Kristopher or others but this time I GOT THE FIRST SMILE. It was this morning and he was just staring at me as I looked down at him, a smile spread and a little coo escaped. I was thrilled! It made my entire week.
My grandma is still in the hospital. She's getting better. I need express that "getting better" needs to be used loosely. She's better today, who knows what tomorrow will be like. She's tired and ready to be home. Unfortunately for her, I don't think home will happen for quite a while, if ever.
A girl I went to high school with had a baby a couple of days ago. She's was only 24ish weeks along. Baby Cricket weighed less than a pound and passed away today. My heart goes out to her as she deals with this difficult time. Please pray for her. Her father just died a few months ago, now her daughter. And to make matters worse, she's doing this alone. The baby's father is not in the picture that I know of. I pray she doesn't reach that dark dark place that is easy to get into when this happens. It makes me think of Baby Samantha. Do you remember me talking about Samantha? I still pray for Samantha, but more so for her mom and dad. I know it's been hard for them and my heart breaks when I think about what her mom must be going through. So many people can be unkind and just don't understand, it's ridiculous.
Other news, we went to the apple orchard last weekend. We got 40 lbs of apples. I made 6 apple pies and 6 apple crisps out of about 20 lbs. We're not applesauce people. The kids like it but could probably live without it (well their bottoms can). So I made up a creamy caramel dip to sliced apples. Troy loves it and it's easy to make.
My boy is fussing. I think it's going to be an extremely long night. Have a good night all. Please pray for my Grandma, Sarah and Cricket, Samantha and Jamie, and for sleep for me, Kris and Weston!
Weight: 10 lbs, 4 oz (5-10th%)
Height: 22.5 inches (25th%)
Head Circum: 14.75 inches (5th%)
I also am proud to announce: I GOT THE FIRST SMILE AND COO! Me...I never get the firsts, that's always Kristopher or others but this time I GOT THE FIRST SMILE. It was this morning and he was just staring at me as I looked down at him, a smile spread and a little coo escaped. I was thrilled! It made my entire week.
My grandma is still in the hospital. She's getting better. I need express that "getting better" needs to be used loosely. She's better today, who knows what tomorrow will be like. She's tired and ready to be home. Unfortunately for her, I don't think home will happen for quite a while, if ever.
A girl I went to high school with had a baby a couple of days ago. She's was only 24ish weeks along. Baby Cricket weighed less than a pound and passed away today. My heart goes out to her as she deals with this difficult time. Please pray for her. Her father just died a few months ago, now her daughter. And to make matters worse, she's doing this alone. The baby's father is not in the picture that I know of. I pray she doesn't reach that dark dark place that is easy to get into when this happens. It makes me think of Baby Samantha. Do you remember me talking about Samantha? I still pray for Samantha, but more so for her mom and dad. I know it's been hard for them and my heart breaks when I think about what her mom must be going through. So many people can be unkind and just don't understand, it's ridiculous.
Other news, we went to the apple orchard last weekend. We got 40 lbs of apples. I made 6 apple pies and 6 apple crisps out of about 20 lbs. We're not applesauce people. The kids like it but could probably live without it (well their bottoms can). So I made up a creamy caramel dip to sliced apples. Troy loves it and it's easy to make.
My boy is fussing. I think it's going to be an extremely long night. Have a good night all. Please pray for my Grandma, Sarah and Cricket, Samantha and Jamie, and for sleep for me, Kris and Weston!
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