Thursday, May 31, 2007
Tuesday, May 29, 2007
Sunday, May 27, 2007
This was taken the day before WalkAmerica, April 27th. I've been meaning to post it for a while. Crawling up the step is a major accomplishment for Eden, and we are SO proud:)
There are additional videos up on You Tube of both Holland and Eden, if anyone is interested. You can see Eden in her pony walker, as well as hear both of them talking. I have just recently gotten into it, so have been putting up videos as I take them, as well as going back through our old ones and adding them.
Posted by Billie at 11:58 AM
Thursday, May 24, 2007
Oh how I love unseasonably warm spring days. I am so looking forward to this summer (only 8 days left of work for me!). Not only because I love the sun and warm weather, but because the girls are going to be so much fun this year. They LOVE being outside, and they love to play. The only problem I forsee is that they never want to come IN!
Posted by Billie at 10:39 AM
Sunday, May 20, 2007
Where does all the time go? I feel like I never have enough time, and never get anything done. What exactly DID I do all day?
Well, John got back on Thursday night from a 3 day business trip to Chicago, so I had my first taste of single parenthood. I can't say that I liked it. I gotta give props to all the single moms out there who do it everyday. You are really amazing. Especially those of you with twins! And more especially to those of you who have twins with special needs! My goodness gracious. I wouldn't have lasted another day, and that is with a ton of help from my mom. Talk about exhausting.
Both girls have been sick the past week with snotty noses. Luckily it hasn't been too bad and they have been pretty cheerful for the most part. The only problems we have had are with Eden not sleeping for a few nights, and with Eden not wanting to drink her bottles for a couple of days.
The not sleeping thing has really thrown us for a loop. We have gotten spoiled. It took Eden a few nights to adjust after coming home from the hospital. She had gotten really used to me sleeping with her, and really wanted to sleep in our bed...on my pillow...with her arm wrapped around my neck and my face pressed against hers. Very sweet really, except that I COULD NOT SLEEP. We had a major battle over that and it was painful.
Eden cries like her heart is broken. Like we are the absolute worst parents ever to make her sleep in her own bed. It seriously feels like a knife twisting in my stomach every time she starts to cry. It sounds like something is seriously wrong. We do everything we can think of trying to help her, but nothing makes her happy until we bring her in our room. Then she smiles, and leaps out of our arms onto the bed, and all is right with the world. Well, we figured her out. There's nothing wrong. She just wants to be in our bed.
The sleep thing is very, very hard. Especially with Eden. We are constantly second guessing, and thinking about all of the terrible things that she could be feeling. Maybe she is in pain. Maybe she is afraid. What if she has a seizure and we don't go in there? What if, what if, what if... We drive ourselves crazy with all the what ifs, then we go in there, and then it takes another week to get her sleeping through the night again. Going in there ALWAYS makes it worse. But we never learn.
She did seem to be back on track for about a week, but last night was a little shaky. We'll have to see how tonight goes.
On the eating front, things have been looking a little bit up. We have a new trick, that I am somewhat ashamed to admit, but we have been letting them sit in from of the TV to eat. Horror of horrors I know, but they are definitely eating more, more easily. We've discovered that Eden really likes sour cream, BBQ sauce, ranch, and gravy. She'll eat most anything if it is dipped in one of these. She also REALLY likes rice. I have had great luck chopping up her meat and veggies really small and mixing them with rice and gravy.
Other news on the nutrition front, and I hope this will be helpful for other preemie families, is that we've made a switch in their milk. Holland and Eden had been drinking Enfamil Enfacare formula, fortified to 27 calories per ounce, since they came home from the NICU. While we were in the hospital this last time I talked to the nutritionist and asked about fortifying whole milk up to 27 cal. She and the pediatrician thought it sounded like a great idea. They checked on the nutritional information, and verified that all of the nutrients are within acceptable limits. It is slightly higher in calcium and phosphorus, which could be a good thing since we know from her chest xray that Eden's bones are pretty thin. The most mind boggling part is that it is going to save us SO MUCH money!!! Yay!!! We will use about 1/3 the amount of formula that we were using before, so instead of spending around $90 a week, we will spend $30. I am so happy about saving the money, that I am only slightly irritated that I was the one to come up with the idea and we could have been doing it a year and a half ago.
As you can see from the pics, we are good to go with the pony walker situation. Eden's private PT needs hers back, so we were working on getting one through our insurance company. The process became quite tedious because the medical equipment company, Binson's, dropped the ball on us. They weren't wanting to pursue it because the insurance company was asking for additional medical information, and Binson's has not had luck in getting our insurance company to pay for that particular walker in the past. On the other hand, we had the insurance company telling us that it would be covered %100 if they got medical records indicating was medically necessary, and that the equipment supplier should at least pursue it until it was or was not denied. Binson's finally said that they would not pursue it unless we signed a waiver that WE would pay for it if it was denied, and that it was $2500. We would absolutely NOT sign knowing that we could get the walker for $1500 from several places online if we ordered it directly.
Anyway, long story short, we found out that Eden's school PT had a pony walker in storage that we could use indefinitely. She brought it on Monday and we have had some fun having "twooo" around the house this week.
I got caught up with scheduling doctor appointments this week, at least for the girls (I have a few I really should make for myself). We will see the ENT, pulmonologist, audiologist, ophthalmologist, and a new physical medicine doctor between now and mid-September. I need to call the new pediatrician this week because I want to get the girls started on Periactin (antihistamine that doubles as an appetite stimulant) and I am hoping she will write us a prescription. After I talk to the pulmonologist, and maybe after we see the physical medicine doctor in September, I will determine whether we will need to schedule an appointment with an OT for a swallow study.
And if you're still reading after all that...kudos to you! You must really care about my girls:)
Edited to Add: A couple of people have already asked about the recipe for fortifying whole milk to 27 cal. We use 3 scoops of Enfamil Enfacare powder to 18 ounces of whole milk. Hope it helps someone else! Be sure to okay any dietary changes with your pediatrician:)
Posted by Billie at 11:59 PM
Tuesday, May 15, 2007
Notice anything different about me? I got myself a new necklace for Mother's Day! I really love it, and have worn it every day since it came in the mail. Lisa, the designer, posted a comment on my Preschool Woes post. It caught my interest, so I followed her link, and this necklace was the first thing I saw. It turned out that I had been to her blog before, so I also spent some time catching up with her adorable boys, and checking out some of the other beautiful jewelry that she makes. Personally, I am a total sucker for anything personalized with my girls' names:)
Anyway, the transaction was very simple, and Lisa was quick to respond, as well as very sweet to me. So, I highly encourage all of you to go check out her jewelry. If I were you, I'd also check out her kids!
Thank you Lisa! I even got it in time for Mother's Day!
Posted by Billie at 10:23 PM
Monday, May 14, 2007
Congratulations to my little brother, Nick, and his wife Sabrina, on the birth of their little girl. Evelyn Baylie was born around 1 this morning with thick black hair and quite a set of lungs. She weighs 7 pounds 4 ounces, and is 19 inches long. Evelyn met her big brother Malachi this morning and he was very impressed with her eyes, nose, and mouth. Actually, we are all pretty impressed with her mouth. Wow!
She is, of course, very beautiful and we are all quite proud of the newest addition to our family. She rounds out the total to a "perfect 10" grandchildren for my parents. I can't wait until Holland and Eden get to meet her. Unfortunately it might be a few days, as they are both sick with stuffy noses again...
Posted by Billie at 2:13 PM
Monday, May 07, 2007
Holland and Eden are going to be three years old in less than three months. It's hard to believe really. At three, they will no longer eligible for home based early intervention services. Eden's IEP is next week, where we will discuss options and come up with a plan for next fall. You have no idea how difficult this is for me.
As far as I can understand so far, these are my options (listed in order of how "restrictive" they are:
1. Eden could attend the Hearing Impaired preschool in Redford Union, with a full time aide. This program is half-days, five days a week. It is the most restrictive option in that it is a "center-based" full time special education placement, outside of our school district.
2. Eden could attend our district's ECDD preschool. This is also a full time special education preschool program. It is cross-categorical, meaning that there are children with a wide variety of disabilities, both physical and mental. The majority of the children in this program would likely be nonverbal.
3. Holland and Eden could BOTH attend at "regular" preschool that we would pay for, and we could take them to the Early Childhood center for OT, PT, and ST (speech therapy).
4. We could keep them home for another year and take them to the center for school-based OT, PT, and ST. Next year, at age four, they will be eligible to attend the free "at-risk" general ed preschool in our school district.
Although there are certainly advantages to each option, we are heavily leaning toward option #4, in conjunction with their private therapies.
I don't like options 1 and 2 because Eden could attend, but Holland could not. I don't like option 1 because I feel like 5 days a week is too much for my 3-year-old, it's like 20 miles away, she would have to ride a bus, she wouldn't have exposure to normally developing language peers, she is so little, and she can't tell me if anything goes wrong. That said, option 1 is also the best in some ways. I have visited the program and have met several of the consultants, and have all nice things to say. The classes are very small, they take great care of the kids, and seem to be really accommodating and caring.
Another downfall to options 1, 2 and 3 is that any preschool program with a group of other 3-year-olds is a cesspool of germies and sickos. Kids are sick. A lot. My kids are no different from other kids, except that what looks like a cold on another kid ends up putting us in the hospital for 3 WEEKS! I can't do that again.
Ruminating about all of this brings up the inclusion issue. I've been meaning to post about this for a while, but never have enough time. I work as a school psychologist, and have a strong bias toward inclusion - or mainstreaming kids with special needs into the general curriculum. I do not think that kids with disabilities should be segregated from their peers, particularly in instances when their only disability is physical.
By age 6, all things considered, I hope to have Holland and Eden in a regular kindergarten in their neighborhood school. Eden will likely need an aide, at least part time, to assist with her physical needs such as using the bathroom, getting in and out of her walker and wheelchair, etc. This is assuming by then that Eden has developed more language and her cognitive abilities are intact.
But am I being too optimistic? Should I be assuming that a general ed teacher will be willing to accommodate her in a regular classroom? Will they take the time to get to know her and to figure out what her strengths are? Will they love her and want to help her? Or will they see her as another burden in an already stressful setting? Will they be unable to see past her limitations to recognize her potential?
And what about preschool? Even if I delay it until they are 4, I still need to decide whether I want to put them in a regular preschool setting, possibly with an aide for Eden, or if I want to go with options 1 or 2 and have them split up. I really hate the idea of splitting them up and having them in completely separate places. I also hate that some preschool teachers might be unable or unwilling to give Eden a chance. I hate that in either setting, general or special ed, we parents have to rely so much on the compassion and abilities of the teacher. It's such luck-of-the-draw. A good or bad teacher can make or break the setting. I don't really care so much whether it's general or special ed. I just want good, quality teachers, who care about my kids. And boy have I seen some good teachers. But boy have I seen some bad ones too.
I am so afraid. I want everyone to love them, and to want to help them. I feel helpless at the lack of control I have over the situation. I wish I could protect them forever from the mean, ignorant people out there who will judge them based on their disabilities. Most of all, I wish I didn't have to worry about any of this.
Posted by Billie at 11:27 PM
Thursday, May 03, 2007
Team Holland and Eden did their thing on Saturday, but we just can't get enough, so we showed up again on Sunday to walk with the St. Joe's NICU team. The weather cooperated and we had a pretty perfect day. The walk itself was much shorter, so we had time after to picnic and play. Lucky for us, they had a metal slide! With her cochlear implant Eden cannot go on plastic slides because of the static electricity they generate, so we are always happy to discover a metal slide.
It was fun to hook up with some of the families that I have gotten to meet through the NICU Family Advisory Board, including the OK Twins Team. We also enjoyed seeing our favorite pediatrician and ONE of our favorite neonatologists, as well as a few of St. Joe's fabulous nurses and respiratory therapists.
In addition to that, after the walk we had the chance to finally meet the Gharaiblets ...at least all four of us finally got to meet all four of them. I had the chance to meet Pam and the girls once, and we have been in contact via email several times trying to schedule a playdate, but someone is always sick! I can't wait to get together in a more relaxed setting so our girls can play and we can talk a little more. Pam and Namir brought us some tasty goodies and gifts for the girls while they were in the hospital. I thought that was such an amazingly kind gesture, and probably the nicest thing anyone outside of my family has ever done for me. So, having a chance to meet them at WalkAmerica was a big bonus.
The whole day was great, but I gotta say that the best part was seeing how excited Eden was to cross the finish line in her pony walker. Near the end of the walk, John ran out to the car and brought the walker around so Eden could finish the walk in it. She squealed in excitement when she saw it, and was one giant smile the rest of the day. I swear, that little girl is my hero!
Posted by Billie at 11:09 PM
...you have to Walk the Walk!!!
I am so overwhelmed, appreciative, and touched by the outpouring of love and support that all of YOU have shown to my family. Not only did we reach our lofty WalkAmerica goal, we beat the heck out of it!!! Yippee!!! I am SO happy and excited!
So far, we have officially raised $4,141.00 dollars, with a few donations still trickling in. Team Holland and Eden also pulled in an additional $255 that is not included in that total (thanks Patti, Lisa, and Roula!). That puts us at $4,396.00, over $1,700 higher than last year! Not bad at all, especially considering that we spent the month before the walk cooped up in the hospital.
I have the best family, friends, and blog readers EVER! Really, thank you all so very much for your generosity and kindness. It means so much to us.
Posted by Billie at 10:25 PM