Our Loves

Friday, December 31, 2010

Look who's 3!!

Well, it is after midnight so it is officially New Years Eve 2010 and today is the boy's birthday. At 11:06 pm and 11:15 pm tonight Preston and Luke will be 3 years old. Wow! Time sure does fly! We are surprising the boys with balloons and pancakes for breakfast this morning and then we are all heading to Jump For Fun for a morning filled with bounce houses, slides and lots of laughing! We told Grandpa to wear his best bouncing socks!! We wish Caroline (& Steph and MiC) could be here to bounce, hehe, but she will probably be a little more up for bouncing next year. :-)

I wanted to put a few of our favorite pictures up from this last year. We had a great Christmas with our family and we are looking forward to a wonderful New Year! Thank you again for all of you who kept us in your prayers this past year. We are praying for a hospital free 2011 and for many new wonderful memories and special moments. I have updates to come about Preston's ARD meeting and our Christmas. Preston's first day of school is Monday the 3rd and we are anxious, but also excited for this new chapter to begin for him. Thank you all and Happy New Year!!!

As Nannie calls them - Hoody & Dooty!! :-) 2 years old

Two years old!

Two years old! You think I am going to eat that??

Sad Presty!

I love dancing to Backyardigins!!


Watching our first movie - "Red Car" - "Cars" Movie!!

Picnics at the Arboretum!

Trying on Daddy's shirt!

Go Rangers!!

Carving Elmo pumpkin is hard work!

Two little train conductors!

We love going to North Park during Christmas time to see Santa and the puppet shows!!

Christmas Morning- Preston was sick, but he will still give you a smile!

Our Christmas Card

Sunday, December 5, 2010

A Sweet November

We had month full of therapy, the beginnings of our PPCD journey for Preston, and most importantly a lot of wonderful family and fun times! The weekend before Thanksgving we went to A&M to watch Aunt Ashy dunk her Aggie Ring. Now you might say, wow that is not quite a child appropriate event. I do agree, but Ashley and her two friends dunking with her had quite a crowd and we were at the back with the boys in their wagon so they really didn't have a clue what was going on. She dunked her ring at their tail gate party before the Nebraska game and the second round of airplane fly-overs occurred right as Ashley started so that was the boys main focus. They were cheering for the airplanes while we were cheering on Aunt Ashy!! I will say she rocked it with at 1 min and 22 second time. Draw your own conclusions as to what my sister has mastered during her time in Aggieland. ;-) Actually, I always loved going to ring dunkings even though I never was talked into dunking my own Aggie Ring (well several Aggies have thrown my ring into a few shots over the years to call it even). I am not a big beer chugger, but cheering people on always made me laugh and I have several fond memories of watching friends dunk theirs. I helped plan Stephanie and Christina's ring dunk at our house in Bryan. I will not go into details as to how that all "came out," ;-) but needless to say I have great memories of this fun Aggie tradition.

Christina met us in Aggieland that weekend, too!! It was her first time back since she had graduated and I was so glad she came. I jump at any chance I get to spend time with my best friend and spending it in Aggieland is even better. I just love going back to A&M! Being there brings back so many wonderful memories and things just feel right in the world there. Christina and I were walking around looking for a friend who was also tailgating and we both had this great epiphany about life as we watched hundreds of Aggies having fun with friends, all supporting their school and just enjoying life. Christina and I have said many times over the last few years that as we grow older the innocence of our youth slowly starts to fade and the harsh realities of adulthood win over. As we were walking around, we thought back to the late nights of studying, the stress and pressure of school and grades and what the future would hold with love and life. We both realized that we really had no idea that life could, and would be more difficult/stressful as we grew older and the responsibilities of life would not just be so narrowly focused on ourselves like they were back then. At the time, the stress felt all consuming and at the pinnacle of what life could bring, but wow were we wrong. We had a good laugh as we talked about this and I thought back to how my Dad would always tell me to enjoy college because the real world is waiting for you when you get handed your diploma. Boy was he right! I think that is one reason I love going down to A&M so much, for a bit while I am there I think I "check out" of the real world and "check in" to the bubble that is Aggieland.

I will really miss having Aunt Ashy's place to crash at after May!! As Randy, Christina and I were pulling the wagon with boys back to the car, we were dreaming of which house we would like to all buy together so we could come to all the games and tailgate and cheer on the Aggies. I have a feeling I am not the only one who is going to miss Ashley being there! We had a lot of fun that weekend and Luke really got to put his "Gig'em Aggies" saying to good use!! The boys ran and played so hard at the tailgate that Luke fell asleep sitting up in the wagon and Preston was asleep before we pulled away from our parking spot! I was pregnant with the boys when we moved Ashley into her dorm that late summer 3 years ago and now her time is coming to a close. Texas A&M is a special place that is really hard to put into words. I am so glad Ashley followed in mine and Steph's footsteps because I know Randy and I have really enjoyed getting to experience A&M again through her eyes! Who knows maybe we will have some little Aggie's of our own someday???

Stephanie, MiC and Baby Caroline made the trek from New Mexico to Nannie's house the day before we went to Aggieland and stayed until the Sunday after Thanksgiving. I had to work late that Thursday night before our trip so Randy took the boys over to Nannie's house so they could all three meet Baby Caroline for the first time. Luke has been saying Baby Caroline since before she was born, so he knew when we said Baby Caroline was coming that he was going to get to see a baby. Preston wasn't quite so into her. Randy said Luke patted her bottom while he was holding her, but Preston was sorta into his own thing and being shy! When I took the boys over on Friday morning to see her before we left I was holding her in the room alone and Preston was being his wild self and climbing on one of the chairs. I was telling him to get down, because he has issues catching himself and has had way to many close calls with his head and tile floor. So as I was holding little 6 week old Caroline and trying to yell loud enough to get Preston's attention it all hit me. Having a tiny baby and rambuncious twins who need some constant watching would be even harder than I always tell Randy it would be. ;-) So I felt very comfirmed in my feelings that we need to wait a while longer before trying to expand our family!

I mean I really love this Aunt of a baby business!! I have been an Aunt since Randy and I got married, which I love a lot also, but they are older. We have more of the slumber party, stay up to late kind of fun when they come down from Columbus to visit. Having a baby to play with and then to give back when she screams, poops or pukes is a pretty sweet deal. ;-) We spent the whole week cuddling her, snuggling and loving on her and then poor Steph and MiC were the ones up at 4, 5 or 6am feeding her. ;-) Actually she is a really, really good baby as long as you don't make her wait too long for her bottle. When she's hungry, you better get her bottle and fast!! I was in amazement really how put together and wonderful Steph was. She got dressed and had her hair done more that week than I do on a typical week now. ;-) I think I would really have to think about the first time I actually got dressed up after the boys were born??? Stephanie is of course an amazingly loving mother and she has just the right touch to calm little Caroline when she is fussy just like our Mom did. I really loved getting the chance to feed her, change her and do all those things that just felt so overwhelming at times when the boys were little. Being an Aunt is a really amazing thing. Seeing your little sister be "The Mom" and getting to see those things in Caroline that remind me of Stephanie are very special. I can only imagine how it makes my parents feel!! We are all blessed to have this new addition to our family!

We all decided to go to Plano one afternoon after Caroline's first photo shoot at the arboretum and have a suishi fest. MiC and Steph always want suishi when they come into town so we waited for Ashley to get home from school for Thanksgiving break that day and then enjoyed a beautiful afternoon on the patio at the Shops at Legacy for some yummy suishi and a lot of laughs. Baby Caroline and Luke were awesome!! Caroline slept like an angel. Luke really feels like he no longer needs a high chair so if he is in an amicable mood Randy and I will let him sit on his knees in a chiar - he is bypassing the booster all together. So he sat next to me in his chair and really devoured some edamame. He really loved to chew on the pods - so I let him and he kept Ashley and I laughing. Preston on the other hand was not exactly happy to being happy-houring it on the patio that day. He took a nap on the way over in the car because he failed to nap at school that day. When he was awakened by his brother making screeching bird noises he wasn't too happy about that. As some of you know, if either boy gets too upset while crying it sometimes leads to coughing, which sometimes leads to gagging, which always leads to massive vomiting. So here we were in the car in Plano parked watching "The Puppy" movie (101 Dalmatians) waiting on Steph and MiC when it starts happening. Ashley was in the way back yelling at me to come back there, Randy's yelling at me to get something to catch it in, Luke's making screeching bird noise and Preston well you know what he's doing. So I hop out, get to Preston's seat and I reach down on the ground and what do I grab, but someone's brand spanking new, been in the car for 5 minutes Turkey Trot shirt we just picked up at Luke's Locker. I shove it under his chin just in time before he christens Daddy's new turkey shirt. Poor Daddy he always get the short straw, but we saved Preston's clothes and the majority of the car seat I had some anti-bac wipes to wipes us both down with and away we went. I think Randy and I both had a fleeting moment of pack it up and head home, but we pressed on and with some walking, singing, fountain watching , iphone cooarsing we managed to get Preston in his high chair on the patio that afternoon and MiC had a beer waiting for Randy when he finally sat down. ;-) Preston turned his frown upside down once he got a hold of my phone and the Talking Tubby game on it. We ended up all having a nice time. One of MiC's friend stopped by, the weather was beautiful and the suishi was good. It was so nice to just have a fun afternoon with all of us!!

Our Thanksgiving was really great, also. Luke got very distraught the night before Thanksgiving. We had to make a late stop at the grocery store on the way home from Nannie's house and I just ran in to to get the boys their carnation instant breakfast and milk while they waited in the car with Randy. Well for some reason this brought back memories of when we bought our pumpkins from that same store one night probably 6 weeks earlier. I was in the store by myself also that time and Randy text me to buy 6 pumpkins and then he loaded them up while the boys watched. So for some reason this night Luke wanted to get more pumpkins, which turned into "Time to go trick-or-treat!!!" We had to persuade him that tomorrow was Turkey Day and that it was really fun, too. He wasn't too happy about not going trick-or-treating that night, but luckily by the next day he was ok with saying it was Turkey Day!!

As we were driving just East of Dallas to have Thanksgiving with my Dad's Aunt Margie and his cousin Suzy's family we passed Children's Medical Center where we nearly spent Christmas at almost 2 years ago. It just again reminded me of how thankful I am that the boys are healthy and we don't have to worry much anymore about spending a holiday in the hospital with a sick child. Randy and I both said a special prayer that day for those families who spent the holiday in the hospital and thanked God for how far the boys have come. We may still have some challenges, but the fear that every lost meal puts us one step closer to a tube or hospitalization is no longer there and that is something I am so thankful for. I try to remind myself of that when one of the boys gets sick. Now it's just an inconvient, mess that makes me sad they are having to experience, but it's not filled with the fear, frequency or anxiety the way it use to be. God has heard so many of ours, our friends, our families and strangers prayers. He has helped Preston and Luke so much! That is one of the many things I am so thankful for! We had a nice time with my Great Aunt Margie and my Dad's cousin Suzy. They are so sweet to the boys and even had booster seats for the boys to sit in for dinner. Preston had yogurt and Luke only wanted a little cheese and a cracker, but I sometimes still sit in awe when Luke says he is hungry. So he basically gets to eat whatever he wants these day. The boys played so nicely there and pulled out every toy in Suzy's toy box - even some match box cars from the 70s. Randy inspected those and claims he had few that were similar himself. ;-) We had a wonderful time and are very grateful to always be welcome at Aunt Margie's!!

We had a such a special week hanging out at my parent's with Stephanie and MiC. For a few days it felt like they didn't have to go back, but by Friday I started to remember they were about to leave on Sunday morning, so I snuggled Caroline tight and I was able to feed her after our late night card game on Friday night. I even got to rock her and help get her settled to sleep. She is such a sweet little one and I am going to cherish every time Steph and MiC bring her home. They are spending Christmas in New Mexico because MiC's sister from Latvia and her family are coming to see them. We will miss Caroline's first Christmas, but they are coming home the weekend of Jan 15th and we are already counting down!!! I have scheduled in plenty of snuggling time!

Well, this week starts the main week for Preston's PPCD final evaluations. Also, his ARD meeting is Thursday to discuss his most likely acceptance into Southlake Carroll's PPCD program. Our main evaluation with all potential therapists is tomorrow and as this day is closing my anxiety is rising a bit. I know he is going to be in the best place for him. I know he will benefit greatly from being in school everyday and having teachers trained to work with his needs. That is what I keep telling myself when I feel sad about it. I guess it is just a little hard to fully comprehend this path we are about to start on. My Mom is a retired teacher and I remember waiting many afternoons in my Mom's room while she was in an ARD meeting. I quickly learned growing up that ARDs are not something to look forward to as teacher or a parent. I always thought ARD's were for special children and now I have a child that needs some special help. Randy and I are going to be the parents on Thursday sitting in that room advocating for our childs needs and finding the best solutions for him. I know I come into this situation seeing it somewhat differently than Randy just because I grew up over hearing my Mom talk about them. I pray that we can both be the right balance of optimism and skeptism to result in finding the right things for Preston. I do know we are so blessed to have been able to move this summer to such a wonderful school district and I pray that it continues to pay off as we move forward.

To answer someone's question from a few months ago about Southlake Carroll's PPCD program here is what sets it apart from other school districts. CISD's PPCD is the only district we could find, possibly in the whole state, that offers what they call a blended PPCD program. Carroll ISD opens the preschool program to all students in the district to go to preschool once they are 3 as of September 1st on a tution and lottery basis. If your child qualifies for PPCD by having certain disabililities they enter the program on the first school day on or after their 3rd birthday for no cost. This is just part of the states requirements of school districs for children with disabilities. From what I have been told the classes are made up of approximately 1/4 special needs children and 3/4 "typically" developing children. This is what makes Southlake Carroll PPCD so unique. Preston will continue to be pushed and learn from his peers like he has been in the preschool his is in now, he will now just also receive the extra help he needs to be able to keep up and hopefully catch up in some areas. So that is the low down as far as I know it now. If I learn anything new I will update as we go.

Thanks for following us on this journey. I was at Scottish Rite this past week for the Christmas Tree lighting and I was able to catch up there with some friends I hadn't seen in a while. It always amazes me how caring people can be and how much they keep us in their prayers. Despite things they may have going on they always take time to check in on us. We appreciate the one of you who helps watch Luke while we are at Preston's appointments, who even offers sometimes with out us asking ;-), those of you we know and love and those of you who are strangers who keep us in prayer, I especially thank all of you. And to all of you, you all know who you are, my best friends who provide a shoulder for me to lean on and a listening ear when I need it. I couldn't make it without out y'all. Y'all give me a voice of reason when I struggle to find it within myself. You give me a safe, unjudging place to talk about my fears and you remind me of my faith when I sadly need reminding. You make me a stronger, better person and I thank you all from the bottom of my heart! I know men and women have different needs, but I will ask you to pray for Randy tonight. I feel like I can really say without a doubt that often Randy doesn't have the emotional outlets like I do, whether he thinks he needs one or not. Through this journey I have learned at times that it can be hardest on the Dads. They don't have the friends and family asking them "how they are doing?" because that's just not what guys do with each other. I just ask you to keep him in your prayers tonight, to guide him, give him a peace about things and to help him continue to lead our family. Randy and I both appreciate all that you do so much! I'll keep you posted on how this week goes. Goodnight!!

Saturday, October 30, 2010

Here I am!!

I feel like I am always making excuses for my delay in blog updates, but as usually there is never a dull moment around here so needless to say life has been busy and I have been neglecting the blog, so sorry. These past 2 months we were able to bump Preston's speech(feeding) therapy and his occupational therapy up to 2xs a week. So I have been taking him to OCH in Dallas on Mondays and Wednesdays. I have also started working 1/2 day a week at a medical spa in Plano (I know that's not much, but it's sort of all we can handle at this point). A good friend of mine works there and her mother is the director. I have been wanting to work with them for a long time and now it is working out so well. They doctor is also wonderful and very supportive of the medical aesthetic's side of her practice so I feel like it is a perfect fit. They have been very flexible with my schedule, so I am able to still take Preston to therapy 2x a week, have Preston's ECI therapy on Fridays, and take and pick up the boys from school on Tue/Thurs, which has been so awesome. It works well because I go in when the boys go down for a nap on Mondays or Wednesday since Randy works from home. I have missed work so much!! It is such a fun and interesting job and I love the medical aesthetics industry so I am so excited to be working again!! My friend and I gave each other microderms after work on Wednesday and I REALLY missed that perk of the job. If anyone is interested in any medical aesthetic procedures shoot me an email and I can probably help you get a great deal on services.

This is a cute picture of the boys with Grandpa in the backyard!

Even though we were able to go 2x a week this past month for feeding therapy it actually didn't really get us anywhere, sadly. Preston got some kind of little bug at the end of Sept and he threw up really only 3 or 4 times and they were really spaced out over a week or so. It ended up really setting him back with his in eating and chewing. His therapist had worked up to being able to get a gold fish in his mouth, with her holding it, and he would take a few bites down on it and not gag on the pieces in his mouth or spit them out. Now neither his therapist, nor I, can get any "chewable" type of food in his mouth. The last several weeks I couldn't get any of his chewing tubes or therapy brush in his mouth, but this week he is letting me again. So maybe we will get back on track in a few weeks. We are dropping back down to 1x a week for his feeding therapy next week because we will run out of visits on our insurance before the year is over if we don't. Insurance can be so frustrating at times, but I am thankful we have it. I just wish Preston could receive more speech therapy sessions. We only get 30 a year which obviously will not last us all year at 1x a week next year. That was actually one of the reasons we did the inpatient feeding therapy, because the therapy sessions during inpatient would not count towards his outpatient 30 year limit. We are not sure what we are going to do about therapy next year, but we will cross that bridge in 2011.

He was also not eating his pureed food with out a big fight for the past 4 weeks, but he seems to be doing better with his pureed eating this week, too. Not sure what was going on with him, but my best guess was the vomiting just really brought his oral aversions back to a severe level until until he could trust that eating isn't the worst thing in the world again. Today he did try to eat a little chip at a mexican food restaurant and he gagged and vomited. Lovely huh?? Thankful no one was sitting around us, so we didn't ruin any one's meal. Nannie quickly jumped in there and cleaned it up, but Luke was shouting "Presty barfed!" and I was trying to get him to quiet down before everyone heard him. Remember I said never a dull moment. One of them vomiting at a restaurant is just about a weekly occurrence for us - so if you see us eating out somewhere, run the other way ;-). That is actually one of the reason I never take them together by myself to a friend for lunch. Randy actually scooped Luke up last Sunday at bruch and got him out the door before he started. Anyways, I am hoping Preston will want to try something "chewable" again, so I am going to try and work with him with these things called baby mum mums. They are rice disks that dissolve easily that I can break into pieces I can hold and try to get him to bite on. This biggest hurdle is getting him to let you put it on his molars. His feeding issues are a roller coaster of ups and downs. I just have to remind myself it is slowly getting better in the long run, but it really can be trying when you he knocks his food off his spoon and it flies all over me and everywhere. Deep breaths!

I do have some pretty awesome news about Preston. About 3 out of 4 of the past nights he has let me me brush his teeth. This is huge for him! Preston's new occupational therapist is absolutely awesome and her and I decided to seriously work on getting him to let me brush his teeth. She has been working with him and I have been working with him and now we have reached some serious success! Preston's therapist told me that most of the severe oral aversion kids end up having surgery to place silver caps and pull teeth because they won't let you brush. That was enough to freak me out and get me working harder. Preston has the most precious, biggest, wonderful smile and I sure didn't want it full of silver caps! We started with just letting him touch the brush to his lips and slowly but surely he is letting me brush them, even with infant tooth paste on the brush!! So I am really relieved about that. Preston's OT also has been having great progress with him by using a weighted vest to help give him more sensory input to help calm him and help him focus on a task, like block stacking. It has really been helping him so Nannie is working on sewing Preston a weighed therapy vest to use at home when we do at home therapy things and also feeding. It is very evident now that Preston has some sensory issues as well. We are going to be able to stay at 2xs a week with his occupational therapy through November because we had some time off from OT in August before we got his wonderful new therapist. She is so energetic, caring and genuinely gets so excited when Preston does well in his session with her. Finding the right therapist makes such a difference and it feels wonderful to have found her!! She is truly a blessing!

We also welcomed a new member to our family this month. Stephanie ended up having a c-sect on October 15, the day before Ashley's birthday, and baby Caroline made her appearance around noon that day. Stephanie tried everything from inversion tables to wierd chinese smokey stick things to get Caroline to turn head down, but she didn't so they had scheduled the c-sect for that Friday. My parents and I were able to drive to New Mexico for the big event. I was so happy to be able to be there for her birth. Caroline Cruz Ferguson weighed 6lbs 7.5 oz and was 21 inches long. She is beautiful and it was such an amazing thing to see her minutes after her big entrance. She was so perfect!! Obviously, I didn't get to see the boys for several hours after they were born because they had to get them "settled" in the NICU and get all sorts of things hooked up. Stephanie was beaming when MiC brought Caroline in to the recovery room for Stephanie to hold her for the first time. It was such a special moment and I am so, so glad I was able to be there. Caroline is so sweet! In person I thought she looked a lot like Stephanie, but now in seeing pictures I see a lot of MiC, so we will see. Stephanie, MiC and Caroline are coming home for over a week at Thanksgiving so we will get a lot of time to snuggle! Luke loves to say baby Caroline! The boys really loves to look at babies so I can't wait for them to see their new baby cousin!!!

This was Stephanie's first time to hold Caroline. It was the sweetest thing!

Nannie snuggling with Caroline!

Grandpa proud of the new girl in the family!!

Caroline headed home from the hospital in Roswell to Clovis. She slept like an angel most of the way.

Last weekend Aunt Ashy was home and we got to celebrate her birthday. Ashley is 22 and wow I can't believe she is that old! I still vividly remember the day she was born! It's so crazy she will be done at A&M this May. We had been planning to take the boys to the game the weekend Caroline was born, which was Ashley's birthday, so we are now going to take them to the game on the weekend of November 20th. We are so excited to take them to their first Aggie game. But this past Friday we were at TCU representing Randy's undergrad alma mater for Frog Fest. Randy was asked to be on the Marketing Advisory board for TCU's Marketing Department this year. We are very proud of him and then at his meeting a professor asked him to be a guest speaker for a MBA class next month. I teased him that he must be really old to be a guest speaker because I always remember guest speakers seeming soooo old, haha!! This puts him one step closer to his dream of some day possibly teaching at TCU, or another university, and I am proud of him for being so passionate about it!! We went to Frog Fest last year with the boys and my parents and we had a lot of fun so we wanted to go again this year. This time it was tricky because the Ranger's game was on, but Ashley and Grandpa went with us (Nannie was still with Stephanie in New Mexico) and we stayed for a while and then went to Pappas Burgers to watch the end of the Ranger game and see history being made. We all cheered on the Rangers with the rest of the restaurant!! It was so exciting to watch the Rangers beat the yankees!! Here is our picture outside after all the excitement!! GO RANGERS!!!!!

We all went to Joe T's on Sunday night for Ashley's Birthday. We love eating outside at Joe T's and it had been quite a while since we had been there. It was a beautiful night! We had a lot of fun with Aunt Ashy last weekend. She is a great sister, best friend and a loving Aunt. Randy loves Ashley like a sister and she adds so much joy to our lives! Thanks Ashley for always being there for us and making all of us smile! You have been there to help us through so much these past 3 years and we ALL love you so much!!! Sorry, Ash, that I didn't get you a card...did that just count? ;-) Happy Birthday, I love you!!

We have gone a few times to the Hall Johnson pumpkin patch. Both boys love, love the tractor!

We are having a fun Halloween weekend. The boys had a Fall Festival at school Thursday and Randy took the morning off so we could be the parent volunteers to help their class. We ended up mostly just helping Preston, because it was a bit of a chaotic scene and Preston really has a hard time being still and calm in crowded, crazy situations. I am really glad we went so Preston could enjoy the festival with the rest of his class!! My parents went with us last night to take the boys to the Grapevine Halloween on Main Street. It was really crowded, and there were long lines for candy but the boys really liked to just sit in their wagon and look at all the "interesting" people. Grandpa wheeled them up and down main street trying his best to let me take them into the haunted house area. I told him NO WAY!! He's crazy! The boys are dressing up as train conductors or "choo choo costumes" this year. I think they could easily be confused with farmers, because I can't get either of them to wear their hats. But they look cute as farmers, too. We got to meet some distant cousins we had not ever been able to meet before. My Dad's first cousin's son, so my second cousin once removed I think, went to A&M and was there the same time I was. He married a girl that was in my sorority and she had twin girls that were born in April, one month after the boys due date - weird huh? They are super cute and their names are Camden and Grayden. We got to meet Camden and Grayden at their parent's restaurant Lazy Bones just off Main Street last night. Ashley worked at Lazy Bones the summer before last, but we just never managed to meet up with them then. It was a quick little meeting, but it was fun to see both sets of twins together and the girls were the cutest Kangaroo and Koala bear I have ever seen!!

We will go trick-or-treating for the first real time tomorrow night in our new neighborhood. My parents are coming over for homemade pizza and then we will go out and see how the boys like trick-or-treating. We have been watching "Little Bill's" Halloween episode all week to get prepared. Luke has practiced saying "trick-or-treat", but it will probably all depend on his mood and whether he will say it or not. Randy absolutely loves Halloween so he is already thinking that next year we need to come up with a family theme of costumes and all dress up. We'll see! So far I haven't managed to get much of a picture of the boys in their Halloween costumes yet. I will try to get a picture of the boys in their costumes and put it on the next update. I hope you all have a safe and fun Halloween tomorrow night! Thanks again for all who keep Preston and us in their prayers. We haven't had much change medically lately and that truly is a blessing and answered prayer! We have a few rounds of doctors appointments next month and I am praying for continued smooth sailing!!

Tuesday, September 21, 2010


It's been too long since my last update I know, but today I am just going to tell you about our day today and who our day was about. Today is a special day because today is Randy's Birthday!! I chose to ignore Randy and get him an actual birthday present this year even though he always tells me not to (just like I do, but I never really mean it like he does). So I ignored him and got him the one thing he has actually been saying he has been wanting lately - a charcoal grill. Not that exciting I know, but he swears charcoal grills are way more awesome than gas so since grilling is his thing I got him what he wanted. So I did my usual research to find out which one was the best budget friendly charcoal grill and I found it. And I have to say it was totally worth the surprise look on his face when he went in the garage to find it this morning. I think I like ignoring him about this no present business.

Now, here's the part I definitely do not do often enough and it's probably actually a true fault of mine. I do not thank Randy enough for the wonderful father he is and for all he does for our family! So since today is Randy's b-day I am going to give y'all a little glimpse at all he does and has done on the roller coaster that has been our life for the last 3 years.

It all started a little less than 3 years ago. From the first day we ended up in Labor and Delivery when I started having issues carrying the boys at around 22 weeks, Randy has been there with a brave face holding my hand along the way. Randy has slept on hospital chairs, fold out couches, air mattresses and he even slept on the cold floor in the PICU (which is a violation of the one parent in the room rule and probably the no parent sleeping on the floor rule) so that neither of us had to face these scary things alone. Randy has been an advocate/fighter first for me when a nurse or doctor made me mad or made me cry and then for Preston and Luke when they needed someone to stand up for them. He has stepped in when I have demanded that "they" (who ever at the time had made me mad) just needed to hear it from "the dad" because they were treating me like "the hysterical mom" even though I know his plate was already too full. He has spent countless hours fighting with our insurance company, doctors offices, and hospitals, often not even letting me in on the current denial at hand just so I don't have to worry. For all that I am so very, very grateful!!

That November day, one day after Preston's big cranial vault surgery, Randy raced from Preston's room at Medical City with me down to the ER when we found out that my Dad was having a heart attack and he cried and pleaded with God with me in the hallway there just like it was his own father. And then it was his own father there in the ER at Medical City two weeks later, except God's plan was different and this time the miracle we prayed so hard for didn't come for Randy's Dad in the way we were asking for it. His father did not make it out of the cardiac ICU. With Preston recovering from a gigantic skull surgery and also still suffering from failure to thrive because of his continuous vomiting, Luke also suffering from failure to thrive because he was refusing to eat, a father-in-law who only lived from a massive, killer heart attack by the grace of God, Randy sat with his Dad in the hospital and was able to tell him goodbye and let his Dad go peacefully. He honestly didn't have a full chance to properly grieve because of all that we were going through at the time (we were back in the hospital with both boys 3 weeks later for several weeks), but he has always remained thankful that God gave his father a full, healthy life for 80+ years and that his father did not suffer for long. How he has dealt with this loss amazes and perplexes me to this day. I still have days when the events of my Dad's heart attack brings me to my knees and I am sure Randy does the same in dealing with his father's passing, but he hides it well, too well.

Randy is the chief barf cleaner-uper! I certainly have to thank him for that. I usually take the barf soaked kid, whomever the culprit is at the moment and we head to the bath. But Randy doesn't get the one that, despite the frustration, sometimes anger and overwhelming feelings, with vomit coming out their nose, they find a smile through theirs tears that reminds you that didn't do this on purpose and they can't help that they have soaked your whole house, car and even their parent's with unbelievable amounts of puke for the last 32 months!! Nope Randy gets the car seat, the floor, the chair, the mattress, the walls that can't smile back at him. And I can tell you that alone should bring me to make him what ever dinner he wants every night of the week - or at least his pick of where we go out for dinner ;-).

Don't get me wrong this hasn't been an always rosey, adversity makes the heart grow founder kinda of thing. At times it has been, but at times we struggle in our relationship with knowing how to be there for one another in the way that the other needs them most. But there have been countless nights that Randy has flat out said he doesn't want to get into it and "deal" with my needs to talk about the things in life that are weighing on my heart, but in the end he listens and consoles me until the wee hours of the morning because he knows I need him.

We both agree that these acts are not extraordinary or things other parents wouldn't do when faced with similar situations, but the fact still remains that when called to action Randy has been the father that I always knew he would be and then he has done even more than I ever imagined he would have to do as a father. He is the one who walked into the NICU to find our tiny 3lb baby Luke getting an emergency chest tube inserted because one of his lungs was collapsing - not me. He has done way more or the dirty or heavier stuff than I have, trust me.

I think since I am the Mom people often tell me or compliment me more about how hard it must be to have twins or have a child/children with medical issues or special needs, but really day to day Randy is in it just about as much as I am and honestly if he wasn't I couldn't do it. I couldn't stay home with the boys every day if he wasn't here helping me day in day out. I am very proud of the father Randy is for the boys and I know his Dad is very proud of him, too! Randy's Dad loved little kids and really he even loved babies. He would cuddle the boys when they were swaddled up like baby burritos and he would also get down on the ground with the boys and "play" with them even though they were just little babies and just barely rolling over or pushing up. Randy has inherited that love from his Dad, too. When he is on the ground playing with Luke's train set or looking at books with Preston it reminds me of his Dad. I know how very proud he would be of Randy and the glow that would be on his face to see Randy playing with the boys, teaching them and even disciplining them. I know there are many more moments to come when Randy's Dad will be smiling down from heaven when Randy's teaches them to fish, ride their bikes and so much more.

Here's a throwback picture from the NICU! I think it is a very precious picture!!

Today was a great day! It was a great day to think about Randy and all he does for the boys and I and it was a great day to remember who shaped him into the father he is today. I know I do not tell you enough, but I do thank you so much for all that you day to make this crazy life, Our Crazy Life!!! I love you!!

Saturday, July 24, 2010

I know, I know, this is incredibly past due!!!!!!

So sorry for the forever long delay!! I so appreciate all of you who pray for us and I know my delay must be driving y'all nuts. We have had a CRAZY June and now July so I will try to catch you up on the major things along the way.

Preston was released the Thursday before Memorial Day and I CAN NOT describe to you how happy we were to all be under the same roof again!! Steph and MiC got in town that evening for their first visit since Christmas and it was our first time to see her with her baby bump (which was really tiny at that point, but it was still really cute). We had a wonderful weekend with them and the fam. Lot's of swimming and just in generally trying to get a nice kick off to our summer and feel the blessing of being out of the hospital.

The biggest challenge once we got home, and sort if still is, is the preparation of Preston's pureed food. He eats 4 meals a day and despite his wonderful inpatient speech therapist Carols' best efforts we were only able to increase his volume and variety of pureed table foods. We are still taking baby steps with any type of crunchy or chewable foods. We do a home speech therapy session with him ourselves as much as possible and he goes to outpatient OT and speech/feeding therapy on Thursdays at OCH.

The outpatient has been slow which is basically what I expected, but it still frustrates me beyond belief. So I try to take deep breaths and pray for God to take away my anxiety about it. I just don't want Preston to be 3 and only be eating pureed food. So I have really started to take an initiative this week to help Preston eat some of his pureed foods on his own spoon feeding himself. He has made some great efforts, but gets frustrated so I am going to make it my mission to get him at least spoon feeding himself by his 3rd bday even if it is still puréed. I think that having someone feed you has to hold you back more than the advancement of the food your eating. I DO NOT want Preston to feel different someday because of the way he eats. So if that's another thing I can do right now to help him eat I will definitely do it.

This is a sneak peak to the next update I plan to get to next week. We went on a kind of last min trip to the beach in Florida for a week over the 4th of July with Steph, MiC and Ash. Disregard Luke he is in a no picture phase right now. I'll share the fun we had on my next post.

That sort of brings me to our second big news.....................................we are MOVING!!!! This is another huge reason I am so behind on the blog. Between making Preston's food, feeding him and then looking, negotiating and now doing some remodeling on the new house I barely have time to check my email - oh and the boys new sleeping arrangements which I will probably fill you in on my next update have added a new level of fun to our life right now.

Right before Preston was admitted to OCH Randy and I had some long discussions, did lot's of praying and even consulted with Preston's current ECI therapist, his pediatrician and ECI therapists and early childhood diagnosticians in the mid-cities and we came to the conclusion that it would be best to move to Southlake Carroll ISD to be prepared for Preston to start in their PPCD program in January. For those that don't know what PPCD is, it is the way the state continues to provide therapy to children who may need it past their 3rd birthday. ECI (in home state therapy) provides therapy from birth to 3 and the day of their 3rd bday ECI stops and they start in the PPCD program (as long as they meet the requirements through developmental testing) in the local school district in which the child lives. This is basically more of a group type therapy in the form of preschool.

We currenlty live in DISD and always planned to either do private school or move out of DISD once the boys were ready for kindergarten, but that was OUR PLAN and I think God had a few others and as that saying goes he laughs at plans right???? So the reason we chose Carroll ISD is because they are the only district that starts inclusion at that level - the preschool level. Therefore Preston will be in a classroom of peers who may function near or beneath him, but he will also be with his peers that perform above him as well. Luke will also be able to go if we chose to send him there. For children who do not qualify for the PPCD, like Luke, we would have to pay for him to attend and it's an expensive preschool so we will probably stay at the new school we found for the boys to start at St. Timothy for now and possibly revisit next fall 2011. So they will hopefully just be in different schools for one semester, the spring semester.

So we are now very busy trying to keep up with boys, pack and do some remodeling at the new house. I have made a top five list of why we are happy we are moving and the top five why we are sad to be leaving the bussle of the big D.

1) Preston will be in the best school we could find for HIM and that is worth it all!!!!!

2) I am very excited to be able to go to Super Target and Sams and not have to "watch my back" for homeless people or beggars. And yes, we have seen two different groups of beggars at two different places off/near Greenville at four different instances. It's ridiculous and makes my heart so hardened and cold to any stranger who tries to approach me now, but many times the babies were with us and we had our hands full and it scared the crap out of Randy and I - so I will not miss that and maybe my kind heart towards strangers can heal some!

3) We will live 15 min closer to my parents than we did before so that's awesome!!! My parent's help us sooo much and we are so appreciative for all they do for us. I know it will be easier on my Mom to come watch Luke when we go to Preston's Drs. appt since we will live closer to her and we won't have to take traffic into consideration anymore!! It also feels like I am moving home, which sounds silly, but it's a neat feeling I had the other night after we had been at the new house and were looking for a place to eat. I am back home!

4) This somewhat ties to 2) but I am so happy to move to just an all around safer place. We live in a very nice part of Dallas, but bad stuff still happens all around us so you just have to be more careful and on your guard. It will be refreshing to put the boys in the car and be able to run in the house to grab something and not freak out about locking the doors and be lighting fast to get back to the car. And so far this is the only summer in the last 3 that our car hasn't been vandalized, like extremely vandalized. Two summers ago some kids thought it would be fun to go up down our ally and pour paint on what they thought were nice cars. Well unfortunatley somehow our not new Escalade got picked and they broke in and poured paint all of the inside, even on the babies car seats, totalling our car. So I will DEFINATELY not miss that kind of meaness.

5) The top 5 reason I am soooo happy we are moving is for the boys. I am so excited for them to be in a school district they can go to from kindergarten to their senior year. I am so happy the boys will have a bigger yard to play in. Our new house is walking distance to Meadowmere Park which is on the Lake Grapevine. So Randy is already invisioning a lot of fun times teaching the boys how to fish!!!

SAD :-(

1) We will miss all our friends over here that we will now not be soo close to. But were are not that far so don't be too sad!! And trust me we have millions of drs appt, private therapy and I still have Junior League at Scottish Rite over here and shopping, oh and eating so trust me I might just be sleeping in Tarrant county and spending many days in Dallas. ;-)

2) We will sooo miss the boys school they have been going to - First Kids preschool at First Baptist Richardson and their ECI therapists. Ms. Ann, Ms. Dot and Ms. Cheryl have been a blessing in the boys life at school and I can't describe how much they made their first year of school so wonderful!!!! They are all 3 so extremely caring and loving and took such a genuine interest in the boys well being this year. They prayed for Preston during his surgeries this spring and during his inpatient stay and they loved on Luke when he had to finish the school year alone without Preston. I could not have asked for more from their teachers and I feel like God put this special ladies in the boys life this past year to help them love school and learning. The boys ECI therapists have become like friends to me. First was Rebecca Preston's PT before he was walking. We still stay in touch and she has twins that turn one in two weeks so we are going to their party!! And then there is Donna and Michelle. All three have been there to help Preston , listen to my fears, give me reassurance and give me the confidence to push our doctors to act instead of react. Thank yall all so much!!! The boys have been so lucky to have been impacted by all these wonderful ladies in their short time on the earth. We have been so blessed to have each and everyone of you!!

3) We will also miss Preston and Luke's babysitters at LifeTime at mockingbird stationand the club it self. This group of ladies that work at this Lifetime are awesome!!! The babysitters are a set of twins who are in there 20s and there mother along with another girl Crystal who is so wonderful as well. They know Preston and Luke when they walk in the door and they give them hugs and play and love on them while Randy and I go have a break, um I mean workout. ;-) After all the boys medical stuff I was concerned about taking them to the gym so we waited until they were 18months old. And I can tell you I wished I hadn't waited so long!! The Life Time at Mockingbird is considered a Premiere club and you have to pay out the waazoo, but it's so worth it. I've been to 2 other Lifetimes and they girls in the childrens center are not anywhere close to as nice. So I will miss the nice private yoga room they have there and the nicer cardio equipment, oh and seeing Mark Cuban play basketball or eat lunch. Tha's pretty funny!! Bye bye Lifetime Premiere club!

4) Two words................................. WHOLE FOODS. I love that place. I could run to it from our house and now the closest will be in Fort Worth or maybe back to my old one :-( This is a sad, sad thing so I guess I'll just have to make do with the Central Market in Southlake. They do have all the assortments of Preston's brown cow yogurt he loves, so that's good. But I will have to make Whole Foods runs weekly to stock up on Luke's stuff he likes and all my blending ingrediants for Presty's meals.

5) Randy and I are both a little sad about leaving our favorite restaurants behind, but trust me we will drive over because we love to eat. Here is a short list but trust me all these places are awesome so if you've never been you have to go!! Houston's if we were rich Randy would eat here everyday, I think we have had 2 different conversations about opening one in Southlake, Celebration Restaurant off Lover's super yummy stuff and they use as much local produce as possible, great place for lunch, Bread Winner's..if you haven't had brunch here you must not live in dallas, and if you do shame on you, enough said, Chuy's love the free queso on the nacho car at happy hour if we can get the boys outta their nap in time to make it ;-), Javier's we never go there as much as we would love to, but it's so so good, Prego they make the best red sauce in the world and we sometimes just buy it in qts and bring it home, and last but not least are two we only got to visit frequently when the boys where either in the NICU or at OCH and these are Scalini's off Gaston, they have the best chicken piccata and then Bangkok City Thai off Bryan st near Baylor, best thai I have ever had!!

6) I guess I have a 6th reason and I am trying to figure out how to explain this. All I can think of is they way our first church home in Dallas would put it - First Baptist Dallas downtown, their goal was to be a light in the dark. And they chose to stand firm and stay downtown to be a ministry in that area not matter come what may. I think Randy and I often felt like us staying in Dallas was keeping another good, strong family in a big metropolitan area to stand ground against the "meaness". I don't think the meanness won in our case, we just chose to go where our son would be in the best hands everday at school, but a small part of me is sad to take our what I presumptously call our "goodness" and move. I pray someone with strong values and a mind for giving back to our community takes our place and does an even better job of keeping the meanness away and letting the light shine.

I have more to update on about the last 6 weeks of so but I think I'll end here. Thank you all for praying for Preston and us and for patiently waiting for me to update. Your prayers have helped us in many, many ways. One quick thing Preston is slowly starting to talk a little more other than just repeating. I saw him point at a star on a video yesterday and say star, star. It makes me cry to hear his little voice and it's just so precious to see him so happy!! I know God is hearing our prayers!! Thank you all!

Wednesday, May 19, 2010

OCH week 4

We are cruising along here at OCH. This is Preston's 4th week. It looks like we will be staying through next week - which is a good thing!! He had some more vomiting issues (not sure if you non-face booker knew about the vomiting, but it started got a littlle better and then at the end of the week and over the weekend it got REALLY bad due to his delayed stomach emptying. It seems to be resolved for the moment by uping one of his meds and by limiting the volume of his meals and taking out his morning snack.

We (mostly me, or my mom, or randy or randy's mom) are now staying all day here and I am now doing the feedings. So far so good! It has been a lot easier this time, since their way of doing things is what we have been doing at home for over a year now. The days are long, but he seems so much happier now that one of us is with him all day. They are still working on his chewing in speech therapy and getting us set up for outpatient therapy after he is discharged, as well as a home plan. If your are bored - we love visitors, between the hours of 3 -5 (that is honestly the worst, slowest part of the day, and 5:30 to 8 (I'm mostly here during the week and Randy does weekends - but we are both up here at night so the boys can play together).

Preston is really being a trouper and has been babbling a lot today - which just melts your heart!! He was sitting on the playground this evening with a cup and a stick and putting the stick in his mouth - which is something he never does. And I thought I heard him saying something and I got down next to him and he was saying "good bites." That is the verbal reward he is given after he "takes his bite." He was taking the stick out of the cup and basically poking it in his mouth and doing it over and over and saying "good bites" and sometimes clapping for himself. It was the most precious thing!! It made me cry. He was just poking the stick in his mouth, but it was great to see him imitating his meal protocols and I really feel like he WANTS to learn how to chew things. So I think desire to learn to chew could be half the battle in my mind!
This was taken on Mother's Day - how can you not love that sweet smile!!

Even though we had first hoped (months ago before being given realistic expectations) to be stopping by McDonald's on our way out of here it is pretty clear we won't be leaving with him even eating anything disolvable. But he is very slowly overcoming his fears and aversions to things in his mouth, so we are feeling glimmers of hope that with a lot of hard work Preston will one day be eating a cheeseburger. Thanks again for the prayers, support and encouragement! They all mean so much to us!!

Wednesday, May 5, 2010

Sippy cup success!! :-)

Ok I am finally getting to an update - sorry for the delay. Preston settled in pretty quickly and once he got the routine down he seemed a lot happier when we came back for the evening. We have brought Luke up every night to play with him and they have both really enjoyed it. They play on the playground and really love to show off their sliding skills when Grandma, Nannie or Grandpa visit. We have also made friends with some of the other feeding patients kids and their Moms so we all have our playtime in the afternoon to get the kids outside and some in the fresh air.

Preston is slowly staring to drink out of a sippy cup. They have been gradually replacing his bottle with a sippy cup in his meals and he is doing better and better with it. He is drinking out of a sippy cup 3 of his 5 meals and is usually getting between 2 & 3 oz each time. So we are really happy with that!! They let us give him a bottle when we get here after his 5 o'clock feed to "top him off" and we also give him a bottle before bedtime, so that has put us out of any NG tube talk lately. As long as he continues to do okay during the day (as long as he doesn't just hold out for a bottle in the evening) they are going to let us continue with those bottles and a NG tube should stay off the table.

On Friday and Saturday he did start having some issues with vomiting, but we feel like that was due to his delayed gastric emptying. His feeding schedule is a lot closer together than at home and more of his food is pureed table food than it used to be so that is definitely slowing his down his already slow digestion. So they have decided to back down on the amount some they give him in the middle of the day and by Sunday he didn't have any issues and we haven't since. We definitely don't want him to get into any patterns of vomiting again. That's no fun for all parties involved!!

We had a conference today with his team here and we didn't exactly come to an agreement as to where we are headed yet. They don't think he will go home eating any type of puff or soft dissolvable because they feel he has a such severe oral aversion to chewing, that it will take a long time to work through. They wanted me to start sitting in on his feedings this Monday, which means we are on our way out the door, because once the parent starts to sit in they really don't start working on any new skills past that point. So we sorta stood our ground and basically told them we want to be here as long as possible - as long as our insurance will allow to maximize this stay - and that so far him eating completely smooth pureed food is actually less than he was doing at home. We had been working on pureed foods with some chunks of pasta, veggies or fruit in it at home.

They agreed to address that tomorrow and basically come up with a new plan. As far as we have been told by the insurance coordinator here this inpatient stay is a one time thing as long as we are with the same insurance carrier. So we expressed our concerns about that and basically told them that we don't want to waste this and that we really wanted to be aggressive with his therapy and to push him. We shall see what they come up with tomorrow!!

Randy stayed with Preston on Friday and Saturday night, so I had a chance to catch up on my sleep. Him and one other Dad are the only one's who trade off with the moms. I am so thankful that Randy does this!! He is a great sleeper and he said he slept ok on his nights, but that he did toss and turn some. One of the other Mom's and I are convinced they have a party in the hallway during the 4am hour. We both can not sleep during that hour and literally wake up 5 min after we fall asleep. Not quite sure what the nurses do at 4am, but I am going to find out. Preston has been sleeping pretty restlessly too and waking up some in the night. But he woke up this morning in a great mood, so I think he is getting used to it. I did get some ear plugs on Monday night and they have actually helped a lot. I have slept a lot better since I got them - only woke up once during the 4 o'clock hour last night. ;-)

I have to give a shout out to my Junior League - Scottish Rite girls - and say a BIG THANK YOU!!! My junior league placement is Texas Scottish Rite Children's Hospital and we do craft nights for the inpatient kids there. I have not been able to go much since January and my sweet Junior League friends surprised me last night and brought me a super cute goodie bag filled with all sorts of great stuff. They even got me a gift card for a manicure and pedicure. I was so shocked when I saw Angela's face here last night and it totally made my night. Randy, Luke and Ashley had just left and just seeing a friend for a little surprise visit was just what I needed!! Thank you girls so much!! That was so incredibly thoughtful!! Preston had a great time laying in my bed digging through it before bed tonight - see the picture below. (Notice the cute quilt on the bed - Ashley found that for me ;-) Trying to make the room feel less like a hospital - and Randy really loves the floral accents - haha!!)

Preston has one of the most severe oral aversion when compared to the other children in the inpatient floor right now, but over the past year he has been gaining weight pretty well (on his mostly liquid diet) and he is not at such a dangerously low weight like most of the other kids here. So once again, we are reminded that it can always be worse and to thank God for his decent, stable weight and ability to maintain it mostly on formula.

Ashley and I were texting last night. We both just had a huge confirmation of something we tell my parents often, but probably not as often as we should. We both said how we feel so blessed to have been born to such wonderful parents. Parents who taught us how to live, love and be caring adults. Mom and Dad, thank you so much for setting the bar high and always telling us we were smart enough and great enough to do what ever we wanted with our lives. I know people can sometimes pull themselves up out of terrible childhoods, but wow - but from some things I have seen lately it seems to me to be a sad cycle that is so hard to break!

Ok - I have to try and sleep. I just had a little interruption. It's 1am and Preston woke up vomiting, which hasn't happened in a long, I mean long time. I think it's because within the last 4 hours he has started to get congested and has started to cough a little. I just talked to the nurse and she is going to get orders in the morning to start his neubulizer steroid and bronchodilator treatments. Those are directions per his pulmonologist, if he starts to get a cough or congestion, and maybe that will keep him for getting too congested or something. Hopefully he can blow through this cold quickly without any more issues like just now. I'll keep ya posted on this latest little development.

Thanks again for all the prayers, sweet cards and words of encouragement! We are honestly doing pretty good with our new little routine right now. The boys had a fun bath tonight and Preston taught Luke a new thing - how to recline in the bathtub and chill!! It was really adorable!!! Have a great rest of the week! Oh and it is officially May 6th - so Happy Anniversary, Randy!! I wish we were on a beach in Mexico!!!!!!!! ;-) Love - J

Wednesday, April 28, 2010

3 days down!!

Well we made it through days 1, 2 and 3. The first day we just had our evaluations and meetings with the team. We had discussions about the NG tube and then discussions about our goals here. It seems like the consensus is that a lofty goal is to get him chewing on some melt away solids, like a baby puff or puffed cheeto. They said that we might not even be there by the end. So our dreams of Preston eating pizza this summer were just that - dreams. This is not exactly what we were hoping to hear, but it seems to be in line with what the pedi has said. I am praying, praying, praying that they get him to a puff!! That is huge hurdle and it's something we can advance on more easily with outpatient therapy and work at home. The past two days his speech therapy has been a slow process and they are really just trying to figure out the best approach for him. I hope by Friday they have a pretty set plan and start to make a little progress with him.

The first day leaving him here (Tuesday) went ok, but today he started crying when I left and chasing after me. Poor little guy! I think he had figured out this wasn't so fun after all. When I got here today was very down and not acting very happy and not even babbling at all. I didn't here him say one thing for 2 hours. He is always a pretty independent player, but this afternoon he would only play by himself and he seemed so distant when I arrived. It really broke my heart and made me scared. I tried to read to him, but he didn't want to. We tried to swing outside in the courtyard, but that was a no go......but he perked up big time when Luke and Randy got here. He really, really missed Luke. Luke gave him the sweetest hug and later Preston sort of gave him one too - which is a first. Luke is usually the one who wants to play with Preston more so than vice versus. But Preston was following Luke around on the playground when he got here and he started "talking" more like he normally does. I think it became very obvious to us today that Preston likes having Luke around even if Luke usually just torments him. We are really going to make sure they get to spend as much time together as possible. This is certainly not fun for us, but he is the one having to be pushed past his comfort zone, alone with strangers these first two weeks, and in a whole new environment without his twin, so we are trying to make it as home like as possible when we get to be with him in the afternoon and evening. We gave them a bath here together just like at home and got them both ready for bed before Randy had to leave with Luke. I hope that helps Preston feel more secure and not so lonely.

I think last night sleeping was an adjustment for him too. He is usually a pretty good at sleeping no matter where we are and the first night he slept just fine, but last night was not so good. He woke up several times and was NOT happy! Luckily he was pretty easy to get to calm down and back to sleep, but I know he didn't get a good nights rest. I brought his radio and favorite bedtime CD up here and I'll leave it playing softly all night so maybe tonight will be better. We have to get up early - 7am - I know that's not too early to most people, but for the Hall Household it's early. Preston is actually better at waking up early than Luke, so that's good. I know Preston will be happy once I am able to stay throughout the day with him, but there's a lot of work to be done before that will happen.

Over the past two days Randy and I have gotten to meet most of the other Moms of the inpatient feeding kids. They,for the most part, have all been really welcoming, nice and friendly. At times it can get to be like swapping war stories around here with the other Moms. It's hard to not sit and go on and on with the other Moms about what Preston's been through and vice versus with their child. It can really bring all those scary feelings to the surface, not to mention depress the heck out of you that there are other children suffering through different things they may never get better for some of them. But the one great thing is it helps to not feel all alone in this. To see that Preston is not he only child who has severe feeding issues and to hear other parents say they hate NG tubes, too can help make this process easier!! We never really experienced that when the boys were in the NICU, partly I feel because they were at Baylor (if you can't figure out why, well, I am not going to tell you - but don't get me wrong we love Baylor and no matter where we move I will stay with my doctor to deliver again at Baylor) but I know some people who's preemies were born at smaller hospitals and they met a great network of other preemie parents and were able to share advice and successes and I am sure share the fears as well. So I know that meeting these other Mom will be a great support and resource as we go forward. One Mom already told me about a horse therapy program in Keller for sensory issues. I had thought about doing therapy with horses once Preston got a little older, but heck if they start at two I am certainly going to look into it.

It also makes the nights seem less depressing overall (as long as we don't spend hours strolling down medically history memory lane), because Randy and Luke are supposed to be out of here by 8 - but we have been pushing it to 8:30 ;-). So we all sit in a small little lounge area and tonight we all just did out own thing, but if you know me, I don't like to be alone, so it was nice to have the company.

Now these other Moms are smart and head to bed around 10, but that doesn't work for me so I am just sitting here alone on the computer. I have trouble sleeping at home on a good night, much less in a hospital with nurses coming in every few hours. They just poke their head in, but it seems to always wake me up, so I may end up addicted to ambien cr before this is all said and done. I am still trying to give myself a couple more nights and just sticking to benedryl, but so far that isn't cutting it. I hate taking ambien night after night, because it definitely does make your sleep problems worse for a while after you stop. I had to take it when the boys where at Children's and I had a hard time getting normal sleep again once they got out, so I am going to try some other things first. I might try melatonin, but I've heard similar things about it as well.

I always take a bath before bed and the rooms here don't have private bathrooms - ;-( !! We had to scrub down the bathroom with the tub so we could give the boys a bath tonight and their are two more that have showers, but it really grosses me out. So I am sriously craving my nightly bath and I think I may have to give in and try the shower because I am going through my bedtime bath withdrawl. I brought shower shoes, our own towel and I will spray it down, too, but I can't decide if the creepy factor is over riding the cravings of my night time bath (subsituted by shower). I will probably have to get over it, because when I am here all day with him, I probably won't get a chance to go home and shower. This place is fairly new and nice, but a community bath room in a hospital just gives me the creeps. Our Lifetime Fitness is probably about half way in between here and our house, so I might could run up there some times when I am here all day. Who knows?? Preston and Luke didn't seem to mind - they were splishing and splashing and having a grand old time. They both go nuts when we say it's bath time and it always makes them soooooo hyper! So they could care less where their bath is.

Ok, I should probably head to bed. Thank you all so much for the prayers! I wanted to say a special thanks to a family who knows who they are. It is so amazing to Randy and I that people who don't know us, or go to our church or even live in this same town as us, keep us in their prayers and are so unbelievably generous to our family. I know that God answers prayers and I have to lay all my worries at his feet, because you know what - to this day God has never let us down. My prayers may not have been answered in my timing, with my answer, or in the manner I expected, but I truly know God hasn't left me hanging. So thank you all again so very, very much! Preston will know someday of all the generous hearts that kept lifting him up in prayer - I can promise you all that! Goodnight!!

Sunday, April 25, 2010

It's about that time!!

Sorry it has been so long since my last post. We have had lots of doctors appointments and stuff going on and I think I was dreading Preston starting feeding therapy so much that I was just avoiding writing about it. But here we are. We found out late last week that a spot for Preston had opened up early, so we are starting tomorrow. YIKES!! I am very glad to start this because that means we are closer to it being over, but these foreboding feelings are really starting to sink in today.

Tomorrow we will drop Luke off at preschool and then we have to be at Our Children's House (OCH) at 10am for his admit meeting. From my understanding, tomorrow will mostly consist of evaluating his eating skills and setting up his treatment plan for his stay in the hospital. We will meet with the admitting physician and then with a team of therapists (speech, psychologist, occupational, physical) who will be doing his evaluations.

The plan for the first 10 to 14 days is for us to leave him (like leave the hospital) in the morning, kind of like dropping him off at school, so that he can have his 4 to 5 feeding sessions and all of his therapy sessions during the day without the interruption of having to constantly tear him away from us, and then one of us will return by 6pm and spend the night. The therapists are all on very tight schedules and if they have to spend 10 or 15 of his 30 min session calming him down it wastes his valuable therapy time. At OCH they do their therapy one-on-one with the child, without the parents present. This is different from the ECI therapy Preston has most recently had. It was a little difficult when we did this last year during the day patient and out patient therapy at OCH, but for the most part I think he needs to be just one-on-one with the therapist - as long as they are patient and kind to Preston. Don't worry we can check up on them through a one-way window and we will.

So Randy and I understand their thinking. He is developmentally (like the age he functions at) on the edge as to whether or not us leaving him all day will be tolerable for him. If he just can not handle being away from us for so long, than I will be there with him during the day from the beginning. I really think he will be ok with it. He does really well when I drop him off at school on Mondays, and at the child center at Lifetime and at church. He is the one who will cry sometimes, but it never lasts more than 5 mins and he will always let whoever is watching him comfort him and distract him enough to get over his sadness pretty quickly. He has done this funny thing a couple times now. The Lifetime we go to is close to downtown and is in a tall building near Mockingbird station. A couple of time we have driven by on the service road and he must have seen the building and when we didn't turn in to go into the parking garage he started crying in his car seat. We finally figured out that it is because he wants to go play at the gym!! HE is always the one that never wants to leave!! So I hope at least the OT and PT will be fun for him and it will help him get through the crappy feeding sessions - because he will definitely cry through those.

The program director and I also discussed something on Friday that had been on our mind regarding this inpatient program. She mentioned that they might need to drop a feeding tube if he really drops off on his daily caloric intake because of not cooperating. Right now he knows that no matter what he will get his bottle and the is holding him back. To get him to move forward (assuming his evaluations say he has the skills to get off his bottle) they will withhold his bottle and try to progress his nutrition more towards a solid based nutrition. If he doesn't eat enough, he can not have the bottle as back up any longer and they would need to supplement his eating with tube feedings.

We knew this was possibility and a NG tube is something we are really against. An NG tube is a tube that is placed down your nose and into your stomach. Both the boys had these tubes when they were in the NICU, which is standard because they can not suck, swallow and breathe until they are at least 34 weeks and then they are weaned off as they get to full feedings by mouth. But the boys also had to have NG tubes when they were hospitalized in Dec. '08 for failure-to-thrive. Luke's didn't last a day - after repeated times of holding him down and shuffing it down his nose, 2x of him vomitting it up, and him repeatedly ripping it out I made them stop that day - he had it for a total of like 5 hours. Preston made it about 4 days - 1 off those days at home - and then we were done with it for him as well.

In my opinion it is totally barbaric - and I know this because I had a tube down my throat, very similar to an NG tube like this one, for 24 hours when I was a kid and it was incredibly painful. Within 10 hours it rubs your throat raw in the back and it is makes it painful to just swallow. I feel 100% confident that this took Preston's orally aversions over the top and I do not want to torture him again like that. Obviously they have to restrain a baby to get it in and the repeated "dropping the tube" among other things during that 2 week hospital visit seriously traumatized and scarred him. After that he stopped using his pacifier, would not let you put anything near his mouth - you could barely get to his face to wipe his nose. I fully understand that both my children needed them and honestly they probably still do. And I know that some babies/kids finally get over it and do ok on a NG tube for a long time, but there is another way - and to me it's a better option for babies/kids with oral aversions. It's called a g-tube and I basically begged for it that time when the boys were hospitalized back in '08, but they wouldn't do it. This tube is surgically placed in the stomach through your abdomen. And honestly when we see new therapists they are always shocked both the boys don't have one. It's a quick surgery, which he would have to be put under for, but not intubated (the way that causes his respiratory problems). It is a more long-term solution and in my opinion for any child that is under weight and is having any oral aversion issues why not just do that instead of torturing them with a feeding tube down their nose and back of their throat.

Randy and I actually had it out with two nurses and a resident at Children's that Dec in 2008. They were going to make us take Preston's NG tube out -the one we had finally gotten to stay in and was finally securely taped to his face (that's another reason they are so terrible - try keeping adhesives and a tube stuck to a drooling babies' face) before he could go home on the NG tube so that we could learn how to drop the tube ourselves. We basically told them they were crazy - why would we put our child through that again for no reason and that we wouldn't be putting it back in our selves anyways. We said we would wait on the home health nurse, so they finally let us go home without doing it after they sent everyone and their dog in to tell us we had to. They also said we were the only parents they had ever had that refused to comply. Seriously?? Let me just get on my soapbox for a minute, or take step higher because I might already be on it, and tell all of ya'll reading right now - doctors, nurses and especially hospitals and their policies do not always know what is best for your child and if you feel adamantly against what any of them are trying to do, educate yourself and then stand up for your child. My sister Stephanie told me something when we were having the great MRI debate with Preston's doctors around Dec this past year. She said "ya'll have to be Preston's quarterback - ya'll have to be the one who stands up for him and take charge of his care!" I think that is so true and it took me a while to learn that. Now I take all of Preston's medical care under advise, not as the law.

Sooo my famous question to them about the NG tube is always - "have you have shoved that tube down your nose and left it there for a while?" They always so no, just like the director did this past Friday when we were discussing it. She did say they put in g-tubes at OCH and if it comes to that we can discuss it. So obviously as you can tell from my ranting that this is a big deal to me and Randy, too. He is actually the one that says no way, never again and I have said maybe we could try and see if he does better this time, but the thought of holding him down and putting that tube down his nose makes me want to cry right now. Not because it is terribly painful putting it in, because it's not, it just feels weird, but because it is so scary to him - it literally is like torture to him. He is scared of things near his mouth, partly because of that dang tube. So this is a huge area we need prayers in - for all of us. I am praying that he moves forward with his eating and doesn't just depend on his bottle as a back up, so that we don't have to even worry about the stupid NG tube.

So that's where we are today. We are washing and packing up his clothes and it makes me cry every time I think about him not coming home for 4 to 6 weeks. I just pray that this works. We had a very long meeting with his pedi two weeks ago to discuss all things concerning Preston and in regards to his feeding therapy he was unsure as to whether this will get Preston eating up to his age level. He wants us to give this a try, but he set up the expectation that this may only get him up to eating a puff or something like that, that is very dissolvable. He said we may need to explore some of the out of state therapy hospitals if this does not bring a great improvement (I was afraid he would say we might need to do that). I am still going to pray and remain hopeful that he is more ready now and that he can surprise them all!!!

Luke will be able to come visit after 6pm and one of us will always be there with him at night. After the first 10 to 14 days one of us will start staying all day and sitting in on the feeding sessions, but not the therapy sessions. And they will slowly start integrating us into the feedings sessions. It is going to be a crazy month, but even if he is just eating a puff without vomiting that will be a huge thing for him. He is not able to self feed himself and I know he is starting to notice that that is different than his peers. So if he can take some puffs to school and eat puffs for lunch, at least he can sit with his peers and put "food" in his mouth and not feel different!!

Ok - that's all about the depressing feeding stuff. Over the last month the boys have done some fun things!! They actually watched their first movie - like sitting on the couch and actually watching it. It was....Cars!! We didn't actually watch it all in one setting because it got too late, but it was the cutest thing to see them sit on the couch and really watch the movie. Luke kept saying "Oh no, Oh no" when the cars where racing in the beginning and crashing. Luke looovvesss cars so we knew this would be the perfect first movie. This was a present from the Easter bunny! Our Easter was pretty low-key! My Mom was in Lubbock for my uncle's wedding, so we didn't really have much planned. We went to the arboretum on Saturday with Aunt Ashy and Josh. It was a beautiful day, so it was really crowded. But we found a spot to have a picnic and relax (we made Randy and Josh chase the boys ;-)) It was a lot of fun!

I took the boys this past Monday to College Station to stay with Aunt Ashy for a few days. After a minor bump in the road - I had to take Luke to an urgent care Tues morning because his ear drum burst Monday night late from an ear infection I didn't know he had. But he is such a tough little guy that by the time we got in to see the doctor Tuesday he was perfectly fine and so we had a fun trip to Brenham to go on the tour at the Blue Bell Creamery. It was neat and the boys were surprisingly cooperative and sat like good little boys in their stroller until the very end when Luke just had to start punching on Preston - 30 mins of being good was just too much to handle! ;-) Ashley and I enjoyed the free ice cream at the end and the boys decided they would rather run and play in the grassy area out front instead of eat ice cream so we got to eat theirs, too. We went to all my favorite places I like eat when I visit Aggieland!! That's always a highlight for me. I even splurged and got a Shippley's cinnamon twist donut on Tuesday morning when I got Luke some donut holes. Shippley's has the best donuts!! Luke is so skinny he could eat donuts all day and probably still not hit the growth chart, so I got him donut holes twice when we were there. He really loves donut holes! On Tuesday night we took the boys to the tennis court in Ashley's apartment complex to let them run out all their energy. Ashley said people let their dogs run around in there sometimes, so we figured it would be a good place to let the boys run around and be caged in, too - haha! We played with bubbles and that's what these pictures are of below. They both like to laugh at the bubbles, especially Preston. We had a crazy, but wonderful visit!! It was so nice to get away and get this feeding stuff off my mind for a bit before we are in it knee deep. I never thought when I first moved to College Station that I would say I miss it, but I do sometimes. People are so nice, warm and friendly there and it's fun to see all the Aggies making their way through college. Thanks for letting us come and helping me with the boys, Ash!

Well, I plan to keep everyone updated on the feeding stuff here and on facebook. I will try to post regularly, but if I don't just email me or FB me if you want an update. Thank you so much for the prayers, support and love! We appreciate it so much!

Love, Jennifer
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