Wednesday, September 30, 2009

Bummer Appointment

So. Dylan had his 15 month appointment yesterday and I'm feeling a bit bummed about it.

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.

20 comments:

lisa (tisaboom) said...

Sorry it didnt go the way you expected!! But Dylan is such a little champ he will breeze through you'll see. And everything he has accomplished so far shouldnt be overshadowed by a flippint comment. Hugs!!

Cathy said...

Oh Laurie...I know you are so disappointed. When I took Lily to her 15-month appointment at the pedi he asked me what Lily was doing. I rattled off the list and then told him that her PT put a lot of her activities at 12 months and some around 10. He looked at me with one eyebrow raised and said "Really?". Of course, I was disappointed...I wanted a "way to go". I was also disappointed that Lily had only gained about a pound and a half in 3 months. I realize that your concerns are not in the fact that he didn't gain, but that he lost. I hope that your efforts to fatten up your little man work!! Just a thought for extra calories...Lily is on whole milk, but I still put about a 1/2 scoop of formula in with a 4 oz. bottle to supplement it.

Dylan is doing so well! I can tell from your writings and your voice in videos how proud you are of him. He such a sweetie and much loved...that's what is most important!!

Adrienne said...

I'm very surprised the doctor would say that! She should know that you would not want to hear it and unless she felt he was functioning a little closer to his age she should've just ended with Great! I mean really. Sorry the appt. did not go so good. I know this has got to be so frustrating at times. I think I'm mentally preparing myself. Hope the next weigh in goes better.

Leigh Anne said...

sorry for the bummer appointment Laurie. But it sounds like Dylan is doing really well aside from the weight thing. I have heard that to "fatten kids up" :), to put butter on everything. Like if he's eating some pureed stuff, melt a little butter in it. It tastes good and has good fats and such. I usually have to dip all of sydney's food in something to get her to eat them haha. or put cream cheese on it, lol. the girl loves her philly :)

hope he gains some for you...

Tim and Kelli said...

Hopefully the next appointment will be better. I could do without the functioning at ___ for sure. Seriously, do they think we like hearing that?
How much milk is he taking a day? I have noticed Lindsey has really cut back and prefers solids but we are limited in what she can eat and not many of them are good fats so I have wondered the same thing when it comes to getting her weighed. This is about the same time Brooke cut back but she was able to keep her weight in check because she was eating everything we were eating.
I think he a accomplished quite a bit in just the last few posts. Look at everything you listed and were excited about.

Anonymous said...

We will continue to keep You All in our Prayers.Keep up the good work you are doing.sontimes Drs.Don't think before speaking.
God Bless

Sharon said...

Ugh! Bummer appointment, indeed. What did Dylan weigh at his last appointment? Do you feel concerned about it? I really do think that Moms know best. Yesterday, at Brennan's 18 month appointment, his ped was similarly unimpressed with Brennan's progress and had some concerns that I simply don't find concerning. All I know is you have so much to be proud of with Dylan. Unfortunately, many doctors know so little....classes can only teach so much!

Cate said...

your doctor needs a lesson in tact. I'm sure she didn't mean to be hurtful, but come on! "Functioning"? What parent wants to hear their kid talked about like that?

I hope you feel better soon. Bad appointments suck.

Amanda said...

Bummer. I'm sorry you had a rough doctor's visit. xo

Anne and Whitney: Up, Down and All Around said...

oh! i am just bummed reading your post. just know that we (your blog readers) all know how great dylan is doing - hopefully you can really think more about all of the things you "bragged" to the dr. about and not the bummer part of the appt (easier said than done, i know).

thinking of you...

Kimberly said...

L,
Dylan has been doing so well. He is accomplishing many things and thriving. Try not to let it get you down, that office needs to think before they speak, this is not the first time you have had problems with them. You may want to think about bringing your issues up to the manager or something.
Dylan has been meeting so many goals, and think of how much he has overcome since he has been born. Not many babies have to have open heart surgery at 4 months. He should not be compared to a child with out Ds and all of the challenges he has faced head on and done so well.
Keep your head up, he is the best, and function at Dylan's level :)

Ann said...

Big *sigh*. Doctors, doctors. Would it have been unprofessional to tell the doc to "suck it"? J/K but only a little. In my humble opinion, I think Dylan is fabulous. Caleb is a couple of months older and he's just now starting to really take to signs. He does 4 but I know there are other kiddos that do more. He still hasn't mastered the straw. His twin sister just stole his honeybear cup and hid it somewhere. She hates it when I don't let her use it. Guess she showed me. : ) Anyway, I'm sorry the appointment left you feeling bummed. Your post has started a lot of thoughts in my head but I think I'm going to save them for tomorrow. I'm going to try 31 for 21 this year. I hope tomorrow is a better day for you. You're an amazing Mommy!

Kim Rees said...

I hear the sadness and disappointment in your post and I want you to know that I've felt your pain before so I know where you are coming from. I had been working on my Children's Church curriculum today and the memory verse this week keeps coming back to me especially in your situation. "How you made me is amazing and wonderful."Psalm 139:14 When I think about Dylan and everything that he has accomplished I truly see that God has made him amazing and wonderful! Every little thing that he does, every little thing that he is makes him amazing and wonderful in his own special way. No one can take that from him. No matter what people say Dylan is Dylan and he is and always will be an amazing and wonderful little boy sent here from heaven! Oh, and FYI my OT suggested I start adding 1 tbsp. of olive oil to Lily's cereal and baby food because 1 tbsp. is 120 calories!

Jocelyn said...

Sorry to hear it was a downer. Doctors just don't get how us mommies don't need everything to be put into clinical terms. Who cares what age level he is functioning at? He's awesome!

We go up and down with weight too, and have been hovering around 15 lbs for months. Before Myles' one year appt the doc office sent us a "developmental checklist" to go through with him. It was like 6 pages long and listed skills that typical 12 month olds are doing. Seriously? I pretty much checked "no" on every question. It seemed a little insensitive, but I'm trying to pick my battles.

Hang in there. You AND Dylan are doing soooo great!!!

Sasha said...

Hey Laurie, hang in there. Yah that's a bit of a bummer. I think that was uncalled for by your pedi. Really I listen to my therapist for development because I find that they really know my child and see him weekly and see how hard he is working. My pedi only see's him for 15-20 minutes once every couple of months-so it's a different perspective. Now the weight thing probably would have gotten to me a bit, to be honest. I have Wysdom's weight checked every 2 weeks by an in home dietician who is part of the feeding team. I find that I can keep track of it this way. Really a lot has to do with how much he throws up. Some weeks it's several times a day and then I know that his weight will be down or just stable.

In regards to foods I just fed Wysdom avacado today for the first time. There is an awesome book if you have time to look at it. It is called SUPER BABY FOOD. I think it is by a woman named Ruth Yaron. I had it for Blyss. It talks about how to make meals for gaining weight and boosting immune systems. For example she always has a complete protein in each meal. She advocates for boosting food and does this by adding lots of neat stuff to regular cereals ect. She combines things like beans, tofu into cerals. PM me if you want more info or can't find it. Best of luck as always.

Susan said...

Laurie,

Please go to youtube and watch

Down Syndrome: Joe at Six-Learning

Please watch until the very end. The parents write a message, and I think that says it all.......

Susan

Tara said...

Laurie - Your little Dylan is so cute. I want to gobble him up. And I want to smack your doctor for the slap in the face. She needs to work on bedside manners. You should be so proud of all of Dylan's accomplishments. Those are great big milestones. Way to go Dylan! And there's no question that he was signing dog. For sure. His tray was in his way so he couldn't slap his little leg. I also wanted to share a quick tidbit about a friend who has a 10 year old with DS. She's in dance, basketball, she reads, swims and she's just a very high functioning little girl. She's really quite impressive. Yet, when she was little, her mom wondered if she'd ever walk. She was nearly 3. Her mom was so frustrated. But now look at her. She's amazing. She just took her sweet time. Anyway, sorry for the way-too-long comment, but I wanted to give you the same hope that I have when I worry about Leah.

Sheila Mitchell said...

Here I am again-Don't worry! #1 the B.S. about what he functions at does SUCK-I never liked hearing it and have buried papers with those statements on it, and never wanted to believe and just ignored it!#2 Mark had LOTS of bronchoscopies (yes they suck too,) but it's for the best, as it will give them more info on whats going on. #3 DON'T GET DISCOURAGED! He's gonna do things you will never expect and work at his own pace. Just take it with a grain of salt,and move on! Dylan is an incouragement to all! Keep up the good work!

Amy and Aaron said...

Sounds like Dylan is functioning at at Dylan-month level to me!! We'll pray that he can put on some pounds and that the heart murmur is nothing to worry about.

By the way, Matthew was only 22lbs at 24 months . . . without any spit-up problems.

Angela said...

Booooooooo

That was a horrible thing to say! She gets the tactless award.