Tuesday, December 29, 2009
I pretended not to hear, but I heard it. It made my eyes teary, too (although I blamed it on the shallots).
It seems as though Dave is feeling the recent changes as well. The peace. The happiness. This sense of meaning and love. Yes, life is coming together. For Dylan. For Cassidy. For me and for Dave.
Dave also said to Dylan, "It's like we were thrown a curve ball. But, I'm so glad!".
See, this week Dylan has learned to say "Dada". He knows who "Dada" is and will say it with much enthusiasm! I had made Dylan a photo book for Christmas and it's been quite a hit! It contains pictures of me, Dave, Cassidy, our dogs, his favorite toys, his milk, his crib, bath etc. Dylan absolutely loves it and since we've begun looking through it, he has learned to say "Dada", will say "Mama" on my page, point to Cass on hers, sign "bath", "eat", "dog", and most recently will sign "night night" on his crib page.
Ah, I'm such a proud mama and I must say - I, too, never knew that I would love him this much.
We are blessed.
Tuesday, December 22, 2009
I remember our life a few months ago. I remember feeling the emotions that I had feared I may feel, as we had been previously warned by our Down syndrome program coordinator that they may surface. Dylan was then 15 months old, an age which was suppose to yield major growth and progression. I didn't see this happening, thus I was not overly surprised to find myself feeling quite badly. I remember writing this post. This post about how frustrated and discouraged I was feeling that Dylan wasn't progressing at the speed that I desired. That he wasn't doing the things that I wanted him to be doing. Surely, there were milestones to be met, had he been following my rules.
Since then, something has changed.
Is it Dylan who has changed? Sure, he has made great gains in the few months since I had written that post. He says "mama" (melts my heart every time!). He army crawls and rolls like a champ. Since beginning a gluten-free diet, his spit up has decreased dramatically and he's beginning to eat baby food with a bit of texture.
Is it me who has changed? I think it may be, but why exactly? Is it acceptance? Patience? Understanding? Appreciation?
Is it, above all, love?
It's difficult for me now to relate to that person who wrote that post. Just as it was probably difficult for that person who wrote the post to relate to the person who had sobbed uncontrollably at the confirmation of Dylan's diagnosis 18 months ago.
It has been a process. It is a process, I am finding. A roller coaster for sure, but lately the ride has slowed down considerably. The drops and loops are few and far between. It's not scary anymore.
The ride has grown familiar to me.
As a matter of fact, being the non-roller coaster type of person that I am, this has, surprisingly, been the most important ride of my life.
Thursday, December 17, 2009
Tuesday, December 15, 2009
Wednesday, December 9, 2009
Ahhh, the first snow.
Monday, our GI doctor (finally!!) called us back. And guess what? We still do not know anything! (Gr!) She said that in 99% of the cases, they are able to determine exactly what the problem is by examining the biopsies. Naturally, Mr. Dylan falls into that itty bitty 1% category. The doctor said that the tissue did appear abnormal, but they do not know why. She said and that while it did not appear to be Celiac, we should continue with a gluten free diet as it has seemed to help with the vomiting issues.
It's frustrating, though. To not know for sure. To watch as he still spits up. To have put him through the procedure only to come back empty handed.
For now, we'll continue forward. Onward and upward we go.
12 Days of Giving: Days 6, 7 and 8
On day 6, I told my husband that I would commit to making dinner once a week. Er, please know that I am completely aware of just how pathetic this sounds, but believe me when I say that I can't cook to save my life. My husband, on the other hand, is a wonderful cook. As I had mentioned in my mediocre mama post from a week or so age, I want to try harder, I want to do better. So, here I go. It was pretty funny though, when I told Dave that I wanted to start trying to cook dinner one time a week, he looked up at me with a slightly frightened expression and said, "Oh. Um. Ok.". Haha! Ah well. With the help of Everyday Food magazine (thanks Michele), I think it will be fun. Or at the very least, it will be interesting. In the mean time, I just hope I don't burn down the house...
On day 7, I continued doing some more, er, in depth research on a very special way that I am hoping to be able to give...
Today, day 8, I am going to finish addressing our Christmas cards. I am also going to write out a letter to each of our Early Intervention specialists, letting each of them know how much we appreciate them.
So that's that. A little recap.
Sunday, December 6, 2009
Yesterday I went Christmas shopping - finally!! I had the 12 Days of Giving Challenge in the back of my mind, but wasn't exactly sure what it was that I could "give".
I decided to pick out a holiday card for Larisa Hertz. Ever since I read her story on Life With My Special K's a few months ago, I have been following her journey. She is an amazingly strong girl who is currently recovering in a burn unit in a hospital in Kansas. It appears that she will be in the hospital during the holidays, so I decided to send along a card with a small donation as well.
Now, this isn't part of the giving challenge, but as I was walking into line there was a woman who was also walking into line. Clearly I was there ahead of her, but I had 32,412 items in my carraige. She was literally holding 2 items in her arms. I stopped, mentioned for her to go ahead of me and said, "You go. Please". She looked surprised, looked up at me and said, "Really? Are you sure?". I laughed and said, "Of course!". She stopped, smiled and said, "Thank you very much".
It was such a small gesture. So easy and yet it made her happy. But seriously? Do people normally not do this?
Today I stole, er...borrowed Bethany's idea to check out the Wish Upon a Hero website. I found a woman in need of winter jackets and clothes for her 1 year old daughter and 4 month old son. I can do that! So, I did.
Now...to think of 7 more things...hmm.
Friday, December 4, 2009
To make a really long, and annoying story (which will just lead me to frustration, again,) short, I never was able to speak with Dylan's GI doctor this week. And believe me when I say it wasn't due to a poor attempt on my part. The doctor's nurse did call me today to let me know that the results were in, but unfortunately they were not able to determine, by the reports from the pathologist, what exactly is causing the cells in the tissue to appear abnormal. She said that the doctor would be calling me on Monday to speak with me more about it, but suffice it to say, they need to have a "clinical discussion" as well as a meeting with the pathologist to determine what exactly is going on.
For now, we are being told to move forward with the assumption that it is indeed Celiac Disease, and are to put Dylan on a gluten free diet. She said that unless they determine otherwise, we will be referred to a nutritionist who specializes in Celiac, so that we can learn more about which foods we are able to feed Dylan.
So we shall see.
Now, don't think that I have already given up on my 12 Days of Giving Challenge! I have been doing it, but didn't think that I needed to dedicate an entire blog post to the fact that after over 5 years of not having a primary care physician, I finally picked up the phone and called my insurance company to determine who exactly is in our network. Not only that, but I then called the doctor and scheduled an appointment for a physical. Go me! Oh, I know it seems silly, but eh. I'm giving the gift of health to myself. That counts! Doesn't it?
So, that was Day 2.
Day 3 is even more exciting because I decided to give the gift of time to my husband! After 3 years of he and I pretty much never leaving our house to do anything social (bad, I know, I know), I called a woman whom my friend recommended to babysit for us on a regular basis. Yeah!
So, there it is. An update of sorts.
Wednesday, December 2, 2009
12 Days of Giving: Day 1 (I'm a day off!)
Bethany from Life with Bubba, Chicky and Nika is sponsoring a 12 Days of Giving Challenge and has inspired me to participate!
For the next 12 days, I am going to think of some small way that I can help someone, anyone. I am not sure exactly what I have to give, but I am committed to thinking of something each day.
This morning I gathered up canned foods, popcorn, oatmeal packets, pudding, jello and a whole bunch of other food items from our home and put it in a nice bag which we will bring over to The Lazarus House. This care package will also include our old television, furniture that we do not need, various toys that the kids rarely play with, some old clothes and shoes of mine and random baby items that we no longer use.
Ah. I feel better, already. Thanks Bethany!
Trying to be patient. Trying to figure out how 5-7 days doesn't really mean 5-7 days. Trying to understand how one doctor can tell me to call the hospital on Monday or Tuesday for the results of Dylan's biopsy, and another can tell me not to call back until at least Friday. Trying to comprehend how I was specifically told, by the doctor who preformed Dylan's endoscopy, that the results would be back in 5-7 days and am now being told that that information wasn't accurate, that it wasn't correct, that she can't understand why I was told it at all because naturally 10-14 days is the norm for biopsy results. Trying to wrap my head around the fact that this, this!, is the best hospital. Trying to hold back, so hard, from calling the hospital right now and demanding that I speak with someone, anyone, who might possibly be able to help me.
I am trying.
But I sort of feel like screaming.
Monday, November 30, 2009
The weather was dreadful and has been for a while now, it seems. Dark. Wet. Rainy all day. We have been completely off our usual schedule lately with Dylan's appointment last week, Thanksgiving, family gatherings.
I felt tired today, but I don't think I am. At least I don't think I should be.
Oh, I attempted an effort today, but quite honestly, it was pretty weak. Come to think of it, did I even take my slippers off? Briefly I'd bet - yes, when I brought Cassidy to get her much needed hair cut.
It's not that our house is dirty necessarily, but then again, it certainly isn't clean, either. I mopped the floors and vacuumed the rugs. The coffee table is relatively shiny. I paid a couple of bills.
I played Pretty Pretty Princess (jealous Piecy?), Memory, "Fishy Game", and read piles of books to both Cassidy and Dylan. We had an EI appointment. We listened to the "Cass cds" and danced around the house. We played tea party and dress up (Cass did the dressing up naturally!).
Cass did spend a good chunk of time with her paci in her mouth watching her new Max ansd Ruby dvds. Dylan napped alot.
Toys were strewn about everywhere and the dog hair...ugh...each a losing battle, I think. Our bathroom trash barrels remained full all day. I thought about emptying them, but I didn't. There is dirty laundry in the washing machine and clutter in the kitchen. If you look closely (or maybe not so closely), you will see that it is dusty upstairs. Garland is wrapped around our porch columns while our rotting Halloween pumpkins sit below. Holiday lights are in clumps on the kitchen floor, waiting to be hung up. Our unmatching (that's not a word, is it?) Christmas stockings are stuffed in a grocery bag on our dining room table.
Come to think of it, I have one plant in my house. One. And it's barely alive. I do not know how to "do" Cassidy's hair. I, along with my kids, spend the majority of our time in sweatpants. And fleece. I don't cook (as I was reminded by Cassidy tonight) nor do I bake.
I am a stay at home mom, but I'm not so certain that I'm any good at it.
One thing I can say with absolute certainty, though, is that I love my kids. Ah, do I love them!
I love how today Cassidy turned to me, after getting hit by our dog's tail, and said, "Bailey just wagged me". How she must have asked me no fewer than 300,000 questions today about everything from, "Why do we have 2 noses?" (I explained that it's actually one nose but 2 nostrils) to "Why did Dylan do a big poopoo in the bath last night?" (Wasn't too sure how to answer that one, honestly). I love how she told me repeatedly that she loves me. Especially when she knew that I was losing my patience.
I love how today Dylan learned yet another sign - "bath". I also discovered that apparently he has been secretly growing another tooth (a molar?!). I realized this when he grabbed my finger and shoved it in his mouth and proceeded to crunch down. (Another sharp little bugger!) I love how today he rolled around our living room floor, then army crawled up to his little karaoke toy and smacked the button down starting the music so that he could "dance" on his belly.
Mediocrity. It's my issue, then, as I don't suspect my kids notice. Don't think they care, either.
But, I know. And because of that, I want to do better. I think that I can do better...
Tuesday, November 24, 2009
And you know, for someone who was woken up before the crack of dawn, Dylan sure was quite the trooper! Here he is in his wee hospital gown prior to the procedure.
The procedure itself went well. Dylan tolerated it appropriately, handling both the anesthesia as well as the biopsies just fine.
It did take him a bit of time to wake up after the procedure and we were warned that when he did awake, he would probably be quite cranky.
Hm, not so much. He blinked his eyes, looked around and snuggled right into my arms. Ahhh, he's the best.
As for the results: In a copy of the report it states that "patchy mild mucosal abnormalities characterized by pale discoloration in a linear arrangement as well as texture changes were found in both the duodenal bulb as well as in the 3rd part of the duodenum. Biopsies were taken with cold forceps for histology".
Ok, so basically what this all means is that there were some abnormalities found which, according the the GI doctor, are most likely consistent with Celiac Disease. If it is not Celiac, it may be esophagitis or someotheritis (that I can't remember right now). It may also be nothing. The only way to know for sure is to wait for the results of the biopsies, which typically take about 5-7 days to come back.
So, for now, we wait. Aaaagain. But this time, at least we may have something to go on.
Thank you so much for all of your positive thoughts. We really appreciate it!!
Monday, November 23, 2009
We are scheduled for the first surgery of the day, thus requiring us to be at the hospital no later than 6:30 tomorrow morning.
While this may seem like peanuts compared to having gone through open heart surgery, I'm still quite nervous for my little guy. Ahh, I don't think it's ever easy watching your kiddo go through any kind of surgery...
If you can, would you mind sending a good thought to Dylan tomorrow morning?
Friday, November 20, 2009
As I sat in the dentist (dental?) chair this morning getting my old fillings drilled out of my head, I couldn't help but think about, well, teeth.
And thinking about teeth made me think about how Dylan is in the process of cutting his very first tooth!
And thinking about Dylan's first tooth made me think about a post that I wrote over a year ago called, "The Dark Side".
I remember writing that post...remember it very well, actually. I remember the real sadness I felt in discovering the likelihood of my baby eventually growing particularly pointy teeth. Seems silly, I know, but back then, just a couple of months into our new journey of Down syndrome, it felt like one more thing that I did not want to deal with. One more thing that I was completely and utterly unprepared to deal with. I remember thinking, heck, this is one more thing that I shouldn't have to deal with, because, after all, I did not sign up for this.
At the time, my baby was 2 months old and had already seen what felt like every single doctor and specialist in Boston. Boston Childrens? Mass General? Tufts? Yep, we had appointments at all of them. My baby had been transferred to the NICU down there, had issues with red blood cells, oxygen levels and had failed multiple hearing tests on top of that. Two months after giving birth, we were on the lookout for signs of heart failure in our baby. Heart failure! Seriously? Open heart surgery was a mere two months away and I was up to my ears in medical bills, MassHealth forms, Early Intervention people, Down syndrome clinic information, "Welcome to Holland" poems that had been to sent to us from friends and family who were trying to help, pamphlets on Down syndrome, AV canal defect information...
And on top of everything else, I now had to concern myself with pointy teeth?!
It felt like yet another reminder that life wasn't going to be easy. It wasn't going to be what I had thought, what I had planned for. It was as if I had received another swift punch to the gut...a harsh reality check.
We have been on this journey now for almost 17 months. Dylan's first tooth has popped through and sure enough, it's as pointy as can be. Actually, it has 2 points to it. And every single time I see it, I smile, for it is a reminder of just how far I have come. Yes, in 17 months my life has changed. It hasn't been easy and it hasn't been what I had thought or planned for, and thank goodness for that. Both my eyes and my heart have been opened to a new life. A better life. The best life.
I am not denying that it was hard for us in the beginning. Digesting an unexpected diagnosis was certainly a challenge. And everything that came along with that at first was quite overwhelming - absolutely! But, we held on. I held on very tightly in the beginning and as the days went on, my grip loosend. Each day, I let a little bit go. The fear, the sadness...it was slipping away. Love was taking over and before I knew it, I had begun to open myself up fully to the experience...of Down syndrome. Of life.
Because as far as experiences go, this one is pretty awesome.
Tuesday, November 17, 2009
"Do you want to know what makes me happy?", Cassidy asked from the back seat of our car.
I peeked at her in the rear view mirror and sighed. This was probably the 312th time she had asked me this question in the span of 10 minutes.
Her answers had already included such things as: macaroni(or as she calls it "macagonis"), playing outside, eating carrots, climbing and the bath tub.
Ok, I can listen to one more answer. One more, that's all. "What's that, Hun?"
"Kissing Dylan", she answered. I craned my neck so I could smile at her. And like they've been known to do recently, each in their own car seat, arms stretched across the backseat, they were holding hands.
It's true. She adores her baby brother and really, I think she always has. From the very first day we brought him home from the NICU, she has treated him well. Like gold. She is gentle, caring and generous. She shares her best toys with him, feeds him Pediasure from his straw cup, and throws away his dirty diapers. She worries when he is upset. She wipes his spit up (seriously, she likes to!) and puts his socks back on when he pulls them off.
Oh, she's not perfect and I'm sure she gets quite frustrated at times. Jealous, even, and I do not blame her, for she has had to learn how to share. Share her time, share her parents, share her life. Not to mention, sometimes there is extra sharing that is required when you have a little brother with...well, a little something extra.
She is 3 years old and has her fair share of willful moments, of willful hours, days, even. She will fight for attention when she feels she needs some and boy does she like to test me. It is me who is tested, though. Not her brother, for there is always love for Dylan.
Last night as she plucked rice from her plate and dropped it on the floor below, she looked at me and asked, "What makes you happy, Mommy?".
I looked at her and without hesitation answered, "You.".
Thursday, November 12, 2009
Lately, along with enjoying preschool and gymnastics class, Cassidy's big interest has been drawing. Specifically: people. She carries her Magnadoodle thing around where ever she goes, all the while asking you, me, anyone, to "surprise" her. Meaning, she wants you to draw her a picture and she will guess what it is.
(Ah, Piecey - if you thought you were out of surprises, I'm waaaaay out!)
Here is her "surprise" for me:
I knew that it was a person, that much I could see. Personally, I think she's gotten quite good at drawing them! (Ahem...that's probably due to the fact that she's had a decent amount of practice. This was noted as I walked through our house spotting ink, crayon and chalk drawn people on every possible surface: notebooks, bills laying around, printer paper, the spit up journal I've been keeping, our coffee table, driveway, stone wall...). So yes, I guessed correctly that it was a person. But I wasn't 100% right. Apparently it was a person with a lot of hair and snow, too.
Lately, along with growing his very first tooth(!!), Dylan has taken an interest in perfecting his army crawl, rolling like a champ, dancing in his booster seat, and learning new signs. Yesterday he began showing us the sign for eat. So far, he is most consistent with doggie, milk, eat, more and being the natural charmer that he is, he will give kisses, as well as clap and wave whenever anyone so much as smiles in his direction.
Here he is showing a few of his best signs.
So, that's what we've been up to lately. And you?
Tuesday, November 10, 2009
At around 9:30 yesterday morning, (after 3 hours of trying to distract Dylan from the fact that yes, he was indeed hungry, and unfortunately still had about 4 1/2 more hours to go before surgery time) the anesthesiologist called my house asking if I "had a few minutes?". He told me that there must have been an oversight with the scheduling as, in his opinion, given Dylan's age, heart history, and diagnosis of Ds, Dylan should have been given the first procedure time slot of the day - a surgery time of 7:30 a.m as opposed to 2 p.m. This first procedure time slot would mean a shorter fasting period, thus the chance of becoming dehydrated less likely. He said that he did not feel comfortable proceeding with Dylan's endoscopy given the circumstances. He said he's been doing "this" long enough and has seen things "that did not need to go badly, go badly and that the most important thing here was to keep Dylan safe".
But that doesn't change the fact that because of someone's mistakes, we have had to pay the price. We are on to surgery date number 3 now, which is scheduled for November 24Th at 7:30 a.m.
And as time continues on, and Dylan's spit up worsens, I am finding that my frustration level isn't the only thing that is increasing. My confusion level is as well. I fluctuate between wanting to just cancel the whole ordeal chalking it all up to low muscle tone, and fighting the desire to march him directly into the ER so that we can have immediate attention.
For now, though, we'll wait. We'll be patient. Again.
Sunday, November 8, 2009
- has a bottom tooth (his very first one!) that is trying desperately to pop through.
- has an endoscopy procedure scheduled for 2 p.m tomorrow.
And me? I am hoping for a miracle tonight. My guess is that unless he is feeling a lot better by 2 p.m tomorrow, his endoscopy will be rescheduled. Again.
Ah, Dylan Ross.
Wednesday, November 4, 2009
What was meant to be a complete AV canal repair, wound up being quite a bit more complicated than everyone had anticipated. Once the surgery had begun, an additional, and extremely rare defect called an A.P Window was discovered. And thus it began. The journey of how our broken hearts were repaired.
Here is an update I wrote the day after his surgery:
Dylan's surgery began at about 8:30a.m yesterday. At around 11a.m, the Physician's Assistant came to update us as to how the surgery was progressing. She told us that the surgery was going to be a bit more complicated than they had anticipated. They had found an additional defect called an A.P Window which they did not know about until the surgery had begun. We later found out that they had never before seen an A.P window with an AV canal defect before. Never ever. Ever.
We were updated again at around 2pm and were told that the A.P Window had been closed and they were now going to begin the AV canal defect repair. She told us that because Dylan had been on the heart/lung bypass machine for so long, as well as having to be put on cardiac arrest, they were concerned that his recovery was going to be quite difficult. We were told that he was going to be sick for longer than they had originally anticipated.
At around 3:45pm we were told that the AV canal had been repaired and that he was now off the heart/lung bypass machine. She said that there was still a bit that needed to be done before we would be able to see him.
The surgeon, a genius to be sure, but yet a man of few words, came out to talk to us a couple of hours later and told us that Dylan was doing "Ok" but that his lungs were "not good".
We sat with that information for a couple more hours until the cardiologist came to talk to us. She was much more optimistic. She was exactly what we needed. We were then able to see Dylan. It was amazing...he is amazing.
Yes, that was it. That was when my thinking began to change. When my feelings began to change. That was when my fears about Down syndrome began to fade, and my love for Dylan began to evolve into something far stronger than what I had thought possible.
My son was fighting for his life. His life that was worth living. And I was realizing that there was nothing more that I could possibly hope for, than to be a part of it. Nothing else mattered.
Dylan began to recover. His heart began to heal. And all the while, my heart was recovering and healing as well. As it turns out, mine was also in need of repair. See, after hearing my baby's diagnosis of Down syndrome, my heart broke. Not completely in two, but indeed, it was hurt. And just as Dylan's heart wasn't working properly, wasn't working to it's fullest potential, neither was mine. It needed perspective. I needed perspective.
It has been one year since the surgery. Dylan's heart is still not perfect. If you were to look closely enough on an echocardiogram, you would see that there is still a very small hole and a mildly leaky valve. If you were to listen carefully to his heart with a stethoscope, you may hear a murmur. In Dylan's daily life, however, these issues are virtually unnoticeable. And over time, his heart is expected to heal completely. And mine? My once damaged heart? I think if you were to look very closely, or if you were to listen hard enough, you may notice that mine is also not perfect. I'd guess that a few small cracks still remain, however most days you would never know it. And I am confident that, as time goes on, like Dylan's, my heart will also make a full recovery.
Saturday, October 31, 2009
Little Chicken had just recently woken up from his nap, so he was a bit, err, dazed,
Friday, October 30, 2009
I called our satellite hospital this morning to verify Dylan's endoscopy procedure. You know, the procedure that I have talked about incessantly for the past, oh, couple of months? The one that I was hoping would help us understand the cause of his constant vomiting? The one that was scheduled by our GI doctor for November4th? Yes, that one. The secretary collected my name and number and said that a nurse would call me back to speak with me about all of the details.
10 minutes later:
Nurse: Is this Dylan's mother?
Nurse: Sooo, he has Down syndrome?
Me: Er. Yes?
Nurse: Oh. Yeah. Um, he can't have his endoscopy done here, then.
Me: Excuse me? Why not?
Nurse: We do not do procedures that require anesthesia on any Down patients.
Me: Excuse me? Why not?
Nurse: Because we are a free standing building and are not connected to any hospital. We cannot take the risk, you see. You will have to reschedule it down at Children's.
So. After throwing the phone across the room and crying tears of defeat and frustration, I picked it (and myself) back up and called just about every medical person we are involved with who I thought may be able to help us expedite the rescheduling process. Unfortunately, I have not been very successful as we are currently looking at the end of November/beginning of December for the next available endoscopy appointment at Children's.
You know, I really do try to believe that things happen for a reason. Seriously, I do. So right now, I'm just hoping that there is a reason for all this. And in the mean time, where oh where have I left my last beer?
Now, I am wondering if you are wondering why I am suddenly quite eager about getting the endoscopy done, when back in July I actually had the opportunity and declined? My answer to that is that his reflux has gotten considerably worse since then. Actually, back then, the endoscopy was scheduled to check for a laryngeal cleft. Vomiting wasn't even a concern a few months ago. So, because his struggles with reflux have gotten so much worse and because he has begun to lose weight, I now feel that an endoscopy is justified.
Am I wondering if perhaps they will find nothing and we will be left with the belief that this is all a low tone issue? Yes. Am I kicking myself (hard!) that I didn't get the endoscopy done when I had the chance. Indeed.
Ah. Onward we go.
Tuesday, October 27, 2009
I called our pediatrician's office to enquire about the availability of the H1N1 vax and because of Dylan's ol' bonus chromosome, both he and Cassidy fall into the "high risk" category. Our appointment was this morning and so far, so good.
Trust me, I am on high alert for any side effects, but to be quite honest, I feel good about my decision. I think.
Ah. As I lied in bed last night, tossing and turning, I couldn't help but stress the heck out, I mean, ponder this whole parenting thing and how insanely difficult it can be at times. I don't know. I just did not feel...good having to choose between possibly allowing my kids to get sick from the Swine Flu or possibly harming them from a vaccination. Bah. Maybe I'm over thinking this and maybe I'm being dramatic, but still. It's hard. For me, having to make decisions that involve the well being of my children is just. plain. hard.
Time will tell, I suppose. But for now, all is good. My kids have forgiven quite easily and we are happy. I think bopping around in the car on the way home to I Gotta Feeling by The Black Eyed Peas helped all of us.
Hold on. You didn't think that I'd be capable of completing a post without mentioning spit up, now did you? Ha! C'mon now!
Dylan's endoscopy is scheduled. You know, the thing that will help us figure out the root of all of his spit up issues?? Yes, that. It will be on November 4th. The one year anniversary of his open heart surgery, naturally.
Thursday, October 22, 2009
Well, I think it's safe to say that I am totally and completely burned out with all of this spit up talk. How 'bout you?
If you can't bear any more of it, please feel free to skip the following update. I wouldn't blame you in the least. Trust me.
So, after talking with Dylan's GI doctor as well as his pediatrician today (why yes, yes I am becoming quite the squeaky wheel), I was informed that some of Dylan's blood work has come back elevated. The elevations were shown in potassium as well as zinc (and somethingelsethatIcantrecallatthemoment) which his doctor said may indicate some kind of allergy and/or irritation in his esophagus or stomach. They are recommending an upper GI endoscopy at this time, which will also include taking biopsies of his tissue. I feel like at this point in time, it is pretty justified, so we are going to go ahead with it in hopes that we will be one step closer in finding an answer for our little guy.
I decided to put Dylan on the floor the other morning. I knew the ramifications may be nasty, but oh well - I let him go crazy - spit up be darned!
I'd say he deserves an "A" for effort. Don't you?
Wednesday, October 21, 2009
Tuesday, October 20, 2009
Because today? Today I am having one of those days.
I am worried about Dylan. Worried about his health and well being. And at the same time I'm worried that when everything is said and done, we will not find any issues and instead will learn that this reflux, this constant vomiting, is something we just need to learn to live with.
Three times in the past two days, Dylan has panicked and choked while vomiting. It almost seemed as though it got stuck in his throat and couldn't move - neither up nor down. After a few seconds, it came up. Out of his mouth yes, and his nose. It was a scary scene, to say the least. Can this be normal? The only experience I've ever had with reflux is this, so I really do not know...
Oh, I am nearing my wits end, I think. I truly may be. My head is spinning.
Nothing is staying down. Every single thing that I feed him comes back up. All. Day. Long. His development is, without a doubt, being severely affected as are his relationships with people. I don't even want to think of the damage that is being to done to his insides.
Sometimes when I feed him, I feel as though I don't know what in the world I am doing. I am suppose to be feeding him fatty foods to help increase his weight, but at the same time, fatty foods do not digest as quickly and with an already obviously slow digestive system, that's not exactly helpful to the situation. There is talk about the possibility of Celiac Disease, so while I am being instructed to thicken his foods with oatmeal and other cereals, I feel like if in fact he does have Celiac, I am certainly not doing his belly any favors by giving him 10 tons of oats and barley a day. His pediatrician said today that maybe he's having difficulty with milk proteins. So, do I feed him milk, soy milk, Pediasure, formula? I don't know.
Ahh. I just hope we find an answer soon. And by soon I mean, like, tomorrow.
*Annoying pity-party over*
Friday, October 16, 2009
Thursday, October 15, 2009
Today was the appointment with our GI doctor. You may remember that Dylan has been having increasing issues with massive amounts of spit up? Yeah, so today was going to be the day that we came up with a plan. The day that we'd come just a bit closer to an answer. A reason why he is losing weight and spitting up 25 times a day. At least I thought it was. I showed up prepared. I had been writing notes upon notes over the past week. I wrote down everything that he had eaten. All fluids. I even kept a spit up log. Remember?
Problem was - they were very busy. I'm not so sure they wanted to hear everything that I wanted to tell them. I was shown that indeed he has lost more weight. While looking at the computer screen - "See that dot? See how he has fallen off the curve?". Yes, yes I do. I'm freaked out. Now what?
The nurse thought that we may want to move forward with an upper GI. Yes!! This is what I had thought as well. (Not that I know anything about anything medical, but still.) She went to check with the doctor to make sure she agreed.
'Spose not as she came back with a different plan. A plan that involved doubling his Prevacid and getting some blood work done. She wants to make sure his thyroid is working properly. I told her that we just had his thyroid blood work done 3 months ago, but she wants to have it taken again. She said to make a follow-up appointment in one month so we can check Dylan's weight again.
Ughhhh. But...but. That's it? No upper GI? No...anything else? We're just going to keep going on as we are? 25 spit ups a day, weight loss and all?
Guess so. We headed downstairs for blood work.
An hour later, three hours after we had arrived, we were in the car driving home. No better off than when we had arrived. No plan. I wanted to scream. Or cry. Maybe even a little bit of both. I tried to tell myself that there is really no reason to cry over spit up. I mean really. It's spit up for cripes sake. Yes, it's frustrating. Yes, it requires ungodly amounts of laundry. But you know what? No. It's more than that. It's scary to me that Dylan continues to lose weight. It worries me that Dylan is no longer able to tolerate floor time play. It bothers me beyond belief that he isn't able to just...be! Everything, everything revolves around keeping his food down. I wanted a plan today. I wanted some hope and instead I feel like we were rushed out of the appointment with no answers.
As I was sitting on my couch a couple of hours after the appointment, the phone rang. It was Dylan's GI doctor. She said that they had been talking about Dylan a bit more and have actually decided that we ought to go ahead with the upper GI after all.
Ah, finally. Something! I suppose I'll hold off on my screaming for now as we may just get to the bottom of this after all.
Wednesday, October 14, 2009
Sunday, October 11, 2009
We attended our local Buddy Walk today. And so many things, so many of the details, were the same as last year.
This year, just like last year, my Little Ones sat in their same spots in the stroller. Like last year, we registered too late and did not get the official Buddy Walk t-shits, and I ran into my friend Sharon from Brennan's Beginnings, shortly before the start of the walk. Also, Cassidy asked for a balloon (although this year, because she refused to let me tie the balloon to the stroller, in a moment of forgetfullness, or maybe curiosity, it was let go and proceeded to float away to the sky), she started out relatively strong, but eventually got tired and yelled and dropped to the ground when she didn't get her way. Dylan drew people's attention, took a short rest in the stroller, and simply had a fine time for himself. Just as he did the year before.
But the differences, the emotions, now those were far more noticeable.
This year we were quite excited about attending! I remember last year, on the drive there, my stomach was twisted up in knots.
This year Dylan's heart surgery is a memory. No, not a faint one, but a memory nonetheless. Last year, we were living in frightened anticipation.
This year I smiled as I looked around me, for what I saw was truly beautuful. Last year, I studied people.
Last year I was scared. I was overwhelmed. I smiled, sure, for I knew that I loved my baby, but still...
This year I was happy. I am happy. Because the fear and the worry has been replaced with hope. With encouragement and optimism. And love. Yes. Lots and lots of that, too.
Happy Buddy Walk-ing everyone!
Friday, October 9, 2009
But first I just have to say thank you all SO much for your wonderfully helpful comments to my boring feeding post yesterday. I have already begun implementing some strategies that you've recommended and will continue doing so. I did want to share this article that was left in the comments section from Alisa. It is from Disability Solutions and is titled, "From Milk to Table Foods: A Parent's Guide to Introducing Food Textures" by Joan E. Medlen. It is specifically written about kiddos with Down syndrome, so I thought that was quite helpful.
On to the reflux.
I know that I have mentioned a few (ahem thousand) times that Dylan has pretty severe reflux. We have tried 4 (or is it 5?) different medications with minimal success. This has been going on for months and months and months. So why am I now all of a sudden officially concerned, you ask? Well, because over the past few weeks, it has gotten significantly worse. I have begun keeping a "spit up log" (now doesn't that sound appetizing?!) and have discovered that Dylan spit up about 25 times yesterday and so far today (it's 2 pm) he has spit up about 23 times.
Wow, I really hope you aren't reading this while eating a snack - sorry!
He has also begun losing weight.
The only change, and it's a pretty big one, is that he's been weaned from nursing for a couple of weeks now. I'm wondering if the increase in spit up is due to switching from nursing to drinking milk from a straw cup? Could he be swallowing too much air as his GI nurse just suggested on the phone? Or is it from the change in breast milk to soy milk? I tried using whole milk but honestly could not tolerate the spit up that resulted from that. :Shudders:
I have been told that he will eventually grow out of reflux, but in the meantime...helllllp! I'm worried about my little guy...not to mention I'm completely drowning in dirty laundry!
Thursday, October 8, 2009
Lately this whole feeding thing has been stressing me out. Everyone says, "Trust your instincts", but to be quite honest, I just don't know...
I just don't know what I am doing.
I wonder, over and over and over again, : Will Dylan learn to eat solid foods when he is ready or is this something that he needs to be taught how to do? How much do I push it? Especially now that he has begun to lose weight, do I really want to make feeding a bigger issue by pressuring him into eating solids? But, that being said, it has been recommended to me by his pediatrician as well as our EI team, that Dylan start eating solid food - real food- food that is high in fat and calories, food that will stay down as opposed to being spit up so that he stops losing weight. Problem is - he's not into real food. At all.
I admit that in the past, I had been taking the super-laid back approach (which may not have been the smartest idea, considering where we are at at the moment...). I would offer him things (crackers, eggs, macaroni), sure, but when he'd turned away or act uninterested, I would stop. Ok, fine. So, I'm kinda sorta still doing that. His therapist on the other hand is a bit more, shall we say, 'aggressive' with the solids. Which is probably a good thing, yet every time she places a rather large piece of food into his mouth, I want to yell, "NOO! STOP!"? It just doesn't feel...right. It doesn't feel natural. Especially when he spits it out and it gets pushed back it.
I am told that the reason he spits the food out each and every time, is because of his tongue thrust. I am told that it is not because he doesn't like the food, but rather he needs to be "taught how to move his tongue laterally.". So, why am I not convinced?
I have gotten so many wonderful suggestions as to what I should be feeding him. Suggestions on how to fatten him up. Toast with peanut butter, scrambled eggs with butter and cheese, avocado, beans, pasta. Problem is - he won't eat the stuff. Whether it's the tongue thrust or whatever, nothing of that sort makes it's way down.
I know it supposedly doesn't matter, but he is still toothless. Might it be that he is just not ready for real food? Is this one of those things that I should back off of and let him lead the way? Or do I need to stop slacking and start teaching him how to move that tongue so we are not packing up baby food for him as he goes off to first grade? Kidding!
Wednesday, October 7, 2009
Acceptance. Pride. Kindness. Love.
This is the stuff that fills me with hope for Dylan's future. For I have a strong suspicion that we are in for some amazing things.
Monday, October 5, 2009
Friday, October 2, 2009
Which reminded me that time goes by entirely too fast for my liking...
Wednesday, September 30, 2009
It turns out that he has actually lost a "significant amount of weight" from his last appointment 3 months ago. Even though he is affectionately referred to by Cassidy as "The Spit Up Guy", I was very surprised when I placed him on the scale and saw his weight at 17 pounds. When the doctor came into the room and read his chart, she asked if we could weigh him again, just to be sure. Yep, 17 measly pounds. Ah. The doctor thinks that this loss could be from his reflux, but isn't sure. She suggested some different things for us to try - Pediasure, whole milk (as opposed to soy), protein at every meal, cereal with each jarred food, avocado, etc. We have 6 weeks to fatten the boy up, as that will be his next weight check. If by then he still hasn't gained, she will recommend that we go ahead with the endoscopy and bronchoscopy. So, there's that.
Then she asked me to brag all about Dylan. She said, "Tell me what is great about Dylan. What has he been doing lately?". I excitedly told her how I'm pretty sure he has learned his first sign, how he drinks from a straw, how he is beginning to experiment with scooting forward when on his belly - commando crawling - and a whole bunch of other wonderful things, naturally! Then, out of left field, like a swift little punch to the gut, she said, "Great! Sounds like he is functioning at around a 9 month old level.". Greaaaaaaat. Could've done without that little tidbit of info.
Lastly, it appears that Dylan still has a heart murmur. I told her that at his last echocardiogram, the cardiologist told me that one of his valves was leaky, but didn't seem overly concerned about it. She recommended that I call and schedule an appointment with them, just in case.
Oh yeah - and the appointment wrapped up with 3 swift jabs to the little guy's sweet unsuspecting legs.
Bummer appointment, indeed.
Monday, September 28, 2009
Here he is tonight. *I am saying the word "doggie" but I am not doing the sign.*
What do you think? I'm tempted to say that he may actually be catching on to signing! Yeah!!!
Thursday, September 24, 2009
If you have minimal interest in all things pertaining to straw cups, please feel free to skip this, as it might actually be the most boring post in the entire world. Ha!
So, after trying 732 different sippy cups, open cups, and nosey cups, I decided to give the ol' Honey Bear Cup a try. You may find one here. I liked this particular straw cup because I could actually squeeze the liquid right into Dylan's mouth. Our OT suggested only squeezing the liquid into his mouth when his lips are sealed on the straw - that way, he will learn that the only way to get the liquid is by closing his lips around the straw.
We started out with milk mixed with Thick-It. I do think that having the milk thickened helped Dylan, as it was much more manageable. Rather than having a thin liquid poured into his mouth (which caused him to choke), this was more like his baby food and he could move it around a bit better before swallowing. Plus, it went into his mouth more slowly and was probably a bit less overwhelming.
After some realllly nasty spit up incidences with regular cow's milk, I decided to switch to soy milk.
I'm guessing (and I am probably way off, as I seem to have a terrible sense of time) that we used the Honey Bear cup for about 3 months or so. I admit, I was getting very frustrated! It seemed that even when I did squeeze the milk into his mouth, he would then proceed to spit it all back out. I even resorted to putting a plastic bib on him - you know the kind with a built in pocket at the bottom? I remember taking it off him after each meal and sure enough, 99% of the milk was in the pocket at the bottom...
So, after a few months of that fun stuff, one day I decided to put the straw into his mouth without squeezing it at all to see what would happen. Lo and behold, he sucked the milk up completely by himself!! If you are still reading this, then I'm sure you can relate and comprehend just how freaking exciting that was!!!! Yeah!!
After he learned how to use the Honey Bear Cup properly, I bought him a real big boy straw cup. He didn't appreciate the switch at first, but after one day, he caught on to the new straw and actually barely spills any milk at all anymore.
I guess my advice would be to just keep practicing and practicing and practicing. I remember a while back a wrote a post about how I feared I must be "insane" because I kept doing the same thing over and over and over and expecting a different result. Well, thankfully our persistence paid off! I'm not insane after all! Yay! No seriously though, I wonder if a big part of this is just plain luck? Practice, consistency and a whole lotta luck!
Well...I hope that was somewhat helpful. If you have any other questions, please do not hesitate to email me. I'm not sure I know what I'm talking about, but I can certainly try to help.
Wednesday, September 23, 2009
Here's a picture of Cass on her second day of school. Yes, yes I know. But, I did take lots of pictures of her first day of school as well, it's just that I, er, forgot to put the camera card in the actual camera for those ones. So...yeah.
Monday, September 21, 2009
After hearing of this, I wanted to write a post about it. About how it makes me feel. About how it will affect Dylan. How it will affect Down syndrome. Heck, how it will affect the world.
But, alas, I couldn't quite get it down. My feelings got jumbled and my head began to ache.
Beverly Beckham does it oh so well. Please read this lovely article written by her, a grandma of a little girl with Down syndrome. It's called, "Seen through loving eyes".
Think about it.
Saturday, September 12, 2009
I was lying in bed last night trying to fall asleep, and all of a sudden I had this revelation. See, I have spent the past few weeks trying to write, (and by "write" I mean "think about") a speech for this Hall of Fame banquet that is fast approaching. I have been inducted into my college's HOF for swimming. Actually, I was inducted at this time last year, however I declined because Dylan's heart surgery was just weeks away and I was unable to wrap my head around anything else at the time. Period.
A few months ago I received some paperwork in the mail and have recently begun to look it over. There is a biography containing specifics about my college swimming carreer. I was asked to review it and email the committee with any inaccuracies. This biography includes fastest times that I achieved, places that I finished in big races and records that I set. I laughed a little bit the first time I read this bio thinking, "Ha! How in the world am I suppose to remember this stuff?!".
Last night it occurred to me why I am struggling with my speech. And why I can't remember the stuff that is suppose to be most important - the best times, places, records. The very stuff that got me into the Hall of Fame isn't the stuff that matters. It's not the stuff that I remember. Or cherish.
As I thought about this, I figured eh, my life certainly has changed since then. It was all about the competition and the races back then. I thought that that stuff must have mattered most to me then and that, because of Dylan, I am just now learning otherwise. That life is not a race. It's not a competition. But you know what? Without realizing it, I must have known this all along. If the most important things to me were the races and the times, then surely I would remember more about that stuff now, right? I mean, I look at that biography and feel quite certain that if they had been talking about a teammate of mine by mistake, I wouldn't know it.
You know what I do remember, though? I remember the friends that I made. The long bus rides we took to various colleges. How my teammates and I ate cinnamon bagels before our Saturday meets. I remember how my coach played the banjo as we grumpily filed in for our 6 a.m practices. I remember our cheers, our big green jackets, Florida training trips, sour patch kids, the weight room.
Isn't that awesome, to be able to remember that kind of stuff? Aren't those the kind of memories you want to cherish? For isn't that what life is about?
So, as I lied in bed last night I smiled. I thought, "Yes! I got it!!". Years from now I will probably not remember exactly when Dylan learned to crawl or walk or talk. I won't remember how old he was when he stopped spitting up (OK, maybe I will, because seriously, that one is realllllly getting old!). I will probably hesitate and have to think hard if someone were to ask me when Dylan stopped eating baby food.
But you know what I will remember? Most definitely, I will remember his smile and his laugh. How he loved to clap and wave. How his mouth moved when he got really tired and how his eyes were when he looked up at me and touched my face.
And thank goodness for that. Because really, isn't that the stuff that matters most?
Wednesday, September 9, 2009
I need to remind myself to love first. Be happy. And stay in the moment.