Happy Thanksgiving!

I hope everyone had a happy thanksgiving and was able to enjoy some time with friends or family yesterday. And if you are shopping today - what the heck are you thinking? Some of the stores in Houston opened at 4am! Are you kidding me? That is crazy. Having worked retail at Christmas you couldn't pay me enough to be out shopping today!

We spent the day with Sean's Dad and Step mom (and lots more family). The boys LOVE going to grammy and grandpa's house and playing. Here are the pics from the day.

Both Riley and Miles like to take pictures so there are some different approaches to photography in this album...

Thanksgiving

Everyone have a great 4 day weekend!!!!!

I forgot...

The Holter was completely normal!! (very cool)

We went to the renal specialist this week. He is now 94.7cm!!!!! (up from 88cm in April) So we are growing!! Also he was 14.5kg! (up from 13 - all year) We are happy he has decided to grow. There have been no seizures, only mild pukes, big big attitude, and a cough. He has been on breathing treatments 4 times a day which is a drag but he is a trooper and his chest is sounding clear! Thank goodness! This time last year we were already on our third case of pneumonia. Found out this week that there is Strep going around the daycare but supposedly he doesn't 'hang out' with that class - hopefully those germs will stay away.

Geez! I almost forgot to say...in 6 months we will do a trial off of the blood pressure meds to see how his blood pressure does...fingers crossed! (initially the doc said he would have to take captopril for 5 or 6 yrs because it is scar tissue that causes the high BP and it has only been 1 yr- I guess we'll see)

hugs to all our heart friends!

New Meds Follow-up

So the medication seems to be working wonderfully! He has had no pukes/pass out episodes since we have started taking it! We are so very happy about that :) He did have one giant puke at school but who knows what that could be from. It is hard to distinguish between his pukes sometimes. The first day we took the trileptal it made him sleepy but he has been fine since.

Halloween is around the corner and Riley will be superman and Miles will be batman. They dressed up yesterday for the It's My Heart 'Boo'l-a-thon. They were so super cute! The whole event went really well! We had about 100 people (we could have had up to 220 in the center, but 100 ain't too bad). The costumes were great and everyone seemed to really enjoy themselves. Sean and I did not dress up but alot of the other grown ups did. Corrie and her husband were Al and Peggy Bundy, Sharon and her husband were Homer and Marge Simpson. They looked great! Since I didn't celebrate Halloween as a kid I never think of dressing up. I have done it a few times over the years but not this year. I think the last time I dressed up I was cat woman, Sean was Robin, Riley was batman (same batman costume as Miles) and Miles was cat baby. By cat woman I mean black outfit and ears...not like Halle Barry or anything.

I got to see a glimpse of the It's My Heart Cookbooks yesterday. I can't wait to get mine! They are only $10, not bad. If you are interested go here to check them out or order your own. These are definitely going on my Christmas list this year! :)

Answers to Questions...

Recently the puking and getting tired (seizures) have been more frequent but I personally think he has been doing it since he was 6 months old. He had a day where he had 6 episodes of puking and passing out. Then on the 6th one he stopped breathing, pretty scary. The EEG then was normal.

I think it is a product of his CHD because it is a vessel, I don't have the cardiologists opinion yet.

We have a diagnosis...

Epilepsy. Interestingly enough it is a 'product' of his CHD!!!!! He has a congenitally underdeveloped vessel in his right temporal lobe where the seizures are originating from. I guess because it is part of his vascular system it is CHD related. (that is how the Nurse Practitioner put it). An incidental finding is that he also has a very small cyst next to this vessel but they don't think has anything to do with his seizures. He will start Trileptal tomorrow (the pharmacy has to order it). His seizures are on both his left and right side which (she said) goes along with epilepsy - something about if it were only on one side it wouldn't be epilepsy...I don't know. Anyway, the meds should take 2 wks to work but will make him drowsy and possibly dizzy. It won't interact with any of his other meds but we will need to monitor liver function I believe (as with most epilepsy meds). I just realized that because it is caused by a congenital defect he won't ever grow out of it...that sucks.

So I guess I have to get him a new medic alert bracelet...

Never a Dull Moment at the Suggs' House

So we got the results of the EEG but are waiting to talk to Neurology to get some answers so we know what the results mean. We have an appointment on Wednesday of next week - the 17th - with the nurse practitioner. (an MD wasn't available until Nov. 1) After we have this appointment we will hopefully have some answers and then I can spill the beans.

This week has been fun, well not really unless you are into kidney stones. Tuesday night Sean comes home from work and said his stomach hurt which is pretty common given his GERD and such. Then he says he can't stand up and he has a fever of 101.7. The pharmacy recommends pepto so he takes some of that. He is literally shaking from the chills and hot to the touch. While he is hanging out on the couch and I am checking my email I start to feel a familiar pain. I think - oh, I know what this is...kidney stone...ouch! So I go potty a couple of times and out it comes, it was a small one (only 2mm). Whew, all is better! Off to bed for me and Sean sleeps on the couch.

The next morning I take the kids to school and Sean stays home. He said he didn't get off of the couch even once and didn't even turn the TV on, he felt so bad! I called, he didn't answer. A friend at work asked how he was doing and I said "He is probably dead on the couch, he won't answer the phone" But he said he was in too much pain. When I got home from work he said take me to the hospital. So I did. We got right back in a room which is amazing! They took some blood and urine and we watched Family Guy (it seems the only time we get to see this show we are in the hospital! It is the only good part!). So the results come back - he has a severe kidney infection...off to Cat Scan. He's got 2 kidney stones! They gave him some good drugs and sent us home after midnight. (the next day I worked 12 hrs after only 4hrs of sleep...so not used to that!) He saw the urologist on Friday and he thinks Sean passed a stone on Wednesday. So one down two to go!

Things calmed down after that. So now Sean has two kidney stones in his right kidney and I have 'several' in my left...but none on the right, well not anymore :)

The boys are doing great btw...no pukes this week at all for Miles!!! Thank God!

Soccer weekend...

Miles finished his holter today and we dropped it off with the valet - yes, the valet - they have a 'box' they said. Anyway, I have some great pictures from the last few days...

Suggs 9/21/07

Miles and Riley both had their first soccer games today. They were awesome! Miles played a bit and got worn out before half time, or right at the half. The shirt came off and he was ready to come home. It was nice today but the sun was really hot!

soccer fun

The cutest thing in the world is to hear my boy say his own name! We have tried for so long to get him to say "Miles" and I just love hearing it! Now we have to work on Vincent...his middle name.

M.I.L.E.S

I will let you all know about the holter results when we get them. I am pretty sure they will be fine! No pukes or falling down all day. He was quite sweaty for most of the experience but that is normal Miles.

A Holter Monitor...

Talked to Cardiology today. They want to do a Holter just to be sure. That will be on the 21st. The cardiologist seems to think it might be neurological in nature. We have an EEG on Oct 3rd but the pediatrician might want to move it up. He did okay today but Sunday he fell and said his legs didn't work anymore. He told me today that he needs new knees because sometimes his are broken and don't work. It is all very strange. The pc did say that his heart looked *so good* in April when we saw him last that he would be surprised if things changed this quickly! That is great! Not only is he a good lookin' kid - he's got a good lookin' heart :)

I will keep you posted...

It's a 3 out of 6...

Went to the doctor this morning. She says that to her his heart sounds the same. Here are the technical terms/numbers. She said the murmur/gallop/swoosh is a 3 out of 6 and that months ago Dr. Tiwari had it as a 3 out of 6 also. There was a note in between those two notes in his file - there was one doc that had his murmur as a 2 out of 6 but she wasn't concerned with that because she and Dr. T agreed. His pulse ox was 96%, heart rate 118 - which is good. She checked his sugars from the last labs he had done and it was 86, which is normal. She said to be sure to talk to the cardiologist on Monday, if not before. If he has this happen again (weakness, easily tired, sweaty, inability to stand up) this weekend to talk to TCH on call cardiology. Sean said to just take him in if it happens again. She said to be sure to explain any changes in his sweating (he has always been sweaty - the only difference is that it is now his whole body instead of just his head - has been that way for months). He is putting together a puzzle with Dad right now and looks/feels great.

Another thing the doc said is that she could NOT feel his spleen. His tummy was tense when she was feeling it because her hands were cold but I am glad she couldn't feel it. I think I know his gut pretty well by now but maybe what I felt was stool (yucky but likely, he is full of it).

We are relieved but cautious. We still plan to go to the It's My Heart - Noah's Ark Water Park event tomorrow. Great - Mommy in a bathing suit - fun! I think the anxiety is already setting in...

New developments?

Talked to the doctor yesterday. She said to call cardiology today. So I called Dr. Justino and he is off on Friday's so he will call me back on Monday. I then talked to the *new* pediatrician Dr. Propst - would you believe this is the first time I have talked to her? She was very nice. She agreed that I should call Cardiology. About the spleen she said to look out for any unexplained fever or rash which I will. There hasn't been anything so far.

I am, however, a little freaked out right now...When I picked Miles up from preschool the teacher said that this morning he did the following...After 15 minutes of play time outside he was very sweaty and clammy. She took him inside, he said he was tired. He sat for a few minutes and then tried to stand up and couldn't. She said he fell down and then he tried again and he still couldn't stand up. She said she didn't call me because his color looked good. She checked his fingernails, toes, etc. but color looked good so no call. She said he rested for 'a while' and then was very hungry. She said he ate more today than any of the other days he has been there. I am not upset that she didn't call - absent the comments from the gastro this behavior would not be that out of the ordinary for Miles. Well a little out of the ordinary but would be okay if it was an isolated incident.

He seemed okay when I went to get him, aside from red circles under his eyes. He was hopping and playing and running and still is. He has been incredibly thirsty. I called the pediatrician again, just to make sure. They just called and said to watch him and if he does it again then...the phone got cut off!!!!!!! ARGH!!! How frustrating! It is after hours and I only get the recording. My guess is that if he does it again to go in tomorrow - they have office hours on Saturday.

They just called back - the doc wants to see him tomorrow morning at 9am. Off to make dinner...

Cyclic Vomiting...sounds fun huh?

I just watched him take his Captopril all by himself!!! What a big kid he is becoming!

Okay, on to the update...

Miles saw the gastro doc today. He said a few things...one that he thinks Miles may have something called 'Cyclic vomiting' which means that there is something neurological that causes him to puke so much. OR that he might have epilepsy. He said we will wait and see what the EEG results (which by the way is Oct. 3rd) say and go from there. He said there are two meds that can be used to treat cyclic vomiting - both of their names are escaping me right now. One is an antidepressant that controls the vomiting part of the brain (if that makes sense - I just got an image of a little brain vomiting...) and the other controls it in some other way that I can't remember. It is getting late. The other thing that Dr. Krishna said was that even though Miles has only gained 600 grams since May that that is okay. And...drum roll...He has grown a centimeter!!!!!! Woo Hoo!!! 91cm (91.7 by the measuring device there!!!) Maybe he has decided that it is okay to grow...

and the third thing he said (and fourth) was that he could feel Miles spleen again :( He could just feel the tip and from Dr. T said before that is about 5 times normal size. Then he listened to Miles heart and said, oddly - "When is he scheduled for his next surgery?" (TWO yrs from now is what I wanted to say!!) I said, He's not scheduled right now - his PV regurgitation is severe and he still has his fenestration... He says...'Oh, that is what i hear then'

All you heart moms know how I am feeling right now right? Does it sound different to you Dr. Krishna? If it does, do we need someone else to look at it/listen to it? Does it sound louder? Or quieter? Or just different? What did you think you heard? I am so full of questions for him really...BUT...he is the GI doc, not the heart doc. He saw Miles three months ago - can he really remember what his heart sounds like??? (the answer is NO, for my sake...)

First Day of School...

Riley had his first day of school last week. He is such a big kid! He loved it and was sad when I came to pick him up. I am glad he doesn't have separation anxiety but I wanted him to be happy to see, even if just a little bit. He has had lots of fun! His favorite part is after care but his favorite part of the day before after care is recess...what a normal kid he is :) He has made a friend - Isaiah. I am glad he is making friends. We have the open house next week so we get to talk to the teacher a little more

Miles started Pre-K yesterday. Dad was concerned that there would be lots of screaming and crying. When they got there Miles ran into the gym and starting kicking balls and riding bikes. Sean walked out for just a sec to write a check, came back and he was gone! He was already off with the teacher going potty. He had a great day! He liked it alot and was sad to go home. When I got there he said, "Mommy!" ran to me and said with a frown, "I didn't want you, where is Daddy?" I know I am not the favorite but come on! :) He ate like a champ (I knew he would) and had no potty accidents. All in all it was a great day!

Miles' EEG will be Oct 3rd. I have to keep him up late and wake him up early - that should be fun. Today we will go to the Gastroenterologist. Last time we went he was unhappy with Miles' digestive system (I am sure Miles isn't too happy with it either). He said that if things hadn't improved then we would be doing another gastric emptying scan (it would be his third). I am not sure if things have improved...bad mommy! I know he has had some poops-pukes and some regular pukes but not alot. He hasn't brought up much undigested food which is good and could be an improvement. He is also potty trained now which is HUGE! Hopefully we can put off the emptying scan, he probably doesn't need anymore nuclear medicine :)

It is always something...

On Saturday Miles started to exhibit behavior that has us a little worried. Riley, Daddy and Miles were cleaning up a puzzle. Miles was putting the pieces in a potato chip bag instead of the box but wasn't aware that he was doing this. Sean told him to put them in the box and he said he was. Then he got this strange look on his face, stared off for a minute, vomited, became listless/lethargic and went to sleep for a long time. While he was sleeping he woke periodically but it was difficult for him to wake up all the way - that took a long time. Add a migraine in there and this behavior is just like Aunt Christy when she has a seizure (she has epilepsy). So we are concerned. We called the doc and we were seen yesterday. She wants to get an EEG and we did some blood work to make sure it isn't anything like his electrolytes or sodium being off. She said after the EEG comes back that we will talk to Neurology. She said the EEG might be as much as 4 weeks out but if the behavior continues or worsens in anyway to call to move it up or if it is really bad go to the ER. Flash back to Nov 2004 and this is the EXACT same behavior Miles had 6 times that day before he stopped breathing/turned blue - twice. I tried to tell them then all of the family history. They did an EEG then and it didn't show anything. He has had things like this happen from time to time - this is the first with the confusion. He has puked more times than I can count but many of those times were preceded by a strange blank stare an d followed by a long nap. I don't know if they are related or not. The doc did worry me about one thing - his MRI. Miles got an MRI of his brain last fall that was ordered by the Developmental Pediatrician just to make sure everything was okay. When Dr. Miller and I talked about it yesterday I mentioned that when given the results the subdural hematoma he had when he was born was mentioned. She said it should have absorbed into his brain by now and shouldn't show on an MRI. She said she would review it and see if we need another MRI. That concerns me a little bit. I LOVE Dr. Miller! Although sometimes she has a way to getting me worried about things that I may not need to worry about. She says just what she is thinking when we see her - like the time she said that Miles should have outgrown all of his digestive stuff by now and that most kids his age would have outgrown this stuff by now. Dr. T told us not to worry about that and that it is okay that he hadn't outgrown those issues. But then the GI said he might not ever outgrow it...

Anyway on to the good news - Miles starts preschool on Sept 4th!!!! We are super excited! We just hope that he can stay healthy! He already started with his normal cough this time of year so I started him on his pulmicort yesterday, hopefully that will help. I wonder if I should go ahead and do the Xopenex too or wait until he is sick? After he had the pulmicort last night he got a little rash on his back - don't know if the two are related or not. He spent a good amount of time running around on a playground last night at Riley's new elementary school so it could have been from the heat. The rash was still there this morning; we are keeping an eye on it.

Please keep Mason in your prayers - he has his Fontan today.

Normal!

It looks like Miles' tests came back NORMAL!! I am very pleased! We do have to repeat the metabolic panel because it appears as if the sample was left to metabolize before they tested it. I hate for him to have to get poked again because someone screwed up their job! It is labcorp and my husband and I have decided to call them labcrap. Our other lab choice is quest and they are the folks that twisted Riley's arm for blood and told me that they were going to have to give him bruises. I came this close to jumping out of my chair...

The blood draw will happen at TCH so worries there. Reggie (I think that is his name) does a wonderful job with Miles. On all other fronts we are doing exceptionally well! Riley will start kindergarten this month and Miles will begin pre-k very soon. Yes, I am going to cry. On the lack of growth...our pediatrician told us previously that based on Miles current height he still falls within normal range for his genetic potential. According to mine and Sean's height the shortest he should end up being - provided he starts to grow - is 5' 5". Not too bad but is quite short for a man.

One last thing, Baby Isaac did become an angel shortly after I posted for prayers. Please keep his family in your prayers.

Please pray for...

http://babyleino.blogspot.com/

This little guy needs lots of prayer.

Overdue update...

I have not posted since May. I started a carepage for Miles...click here to see it. I have been better at updating that. My family requested an email when I updated...

Here are some recent pictures. Everyone is doing very very well. Miles did stop growing and we are awaiting the test results from the endocrinologist as I type this. They are testing for a thyroid problem, growth hormone deficiency and/or Celiac disease. I am hoping that they find nothing - those all suck! I will update with the results when we get them. Both boys have a dentist appointment this week, that should be fun! (ha!) We practiced dentist tonight so that should help. I am a big fan of practice.

We do have some big news that I have not posted on the carepage yet - you get the first peek at it! Miles has been potty training this week and last! He is doing very very well!!!! He has a hard time with public potties but is doing beautifully here at home! He is singing behind me - "This is the day...This is the day...that the Lord hath made..." I love it!!

Here is a conversation between Riley and myself from last week:

Riley: "Mommy, Alex (a heart friend of ours) saw Miles' bald spot."

Mommy: "That is okay, no big deal" Riley: "Does Alex have a bald spot?"

Mommy: "Nope." Riley: "How did Miles get his?" Mommy: "After Miles' surgery he got a big sore on his head and the hair fell out."

Riley: "Do I have a bald spot?" Mommy: "Nope." Riley: "Did I have surgery when I was a baby?" Mommy: "No. Remember Miles was missing a piece of his heart so he had surgery to put the missing piece in..."

Riley: "The cow piece right?" Mommy: "Yes, the cow piece."

Riley (with a grin): "Mommy...Miles is a...Cow Boy."

Priceless!!!! I love it!

Miles quote - we were talking about how someone was 'just' like him

"No one is no one like me!" (you got that right mister!)

Happy Birthday Miles!!!

Make an on-line slide show at www.OneTrueMedia.com

Cardiology Check-up

We just got home from our heart check up. Miles did so well - I am SO PROUD OF HIM!!! He stayed so still throughout the whole echo, he was amazing! We practiced again last night - it paid off! He did such a good job with the EKG too! Last time we went they didn't get an EKG because he screamed too much. He was a model patient today! If you have Child Life at your hospital, you should really check it out! It has been a life saver!

Down to the results...The regurgitation in his pulmonary valve has gone from moderate to severe. He said not to worry about this as children can have pretty bad regurgitation for a long time before it does anything to their hearts. The conduit has "a little bit" of narrowing, but again we shouldn't worry about this. The pc said we could get a couple more years out of both the conduit and the valve. The fenestration (or hole they made in his heart during the last surgery) is 5mm - a medium size hole. He said that too can stay a little longer. He said it looks like Miles can be surgery free for a couple more years!!!! We are so excited about this! He was such a good kid today, the reward he has requested is cake - so cake he shall have :)

Cute Miles sayings: When we pulled into the church parking lot on Sunday I said, "We are here at church" Miles says "This place makes my heart happy!" WOW!!! Today when we got to the hospital he says "This place makes my heart happy!" I explained to him that both of these statements are true!!! So today all of our hearts are happy! I was scared that they were going to say things were bad but we are so glad to not need anything for a while. Lets hope it stays that way!

They did have one concern...This time last year Miles was 88cm tall. Today Miles is 88cm tall. He has not grown even one cm in a whole year!! He has gained weight but not gotten any taller. He has gone from the 50th percentile in height to below the 5th. We have to keep a close eye on this or we will need to go see an endocrinologist to test his growth hormones. He is pretty short...Will be three next month and is still in *some* 18 month pants but mostly 24 month.

Thanks for checking in on us! We love to read your messages :)

The Suggs bunch

Practice Echo...

Miles' heart check up is on April 3rd. It feels like we have been waiting for it forever! His last echo was November 2005!!!! Can you believe it? We went in April 2006 because he started to crack when you pick him up but the pc thought he looked so good we could wait a whole year to come back. So now we are approaching 18 months without an echo. I am a little worried, just like any mom would be (especially us heart moms, we get trophies for worry we are so good at it). So tonight we did some fun things. We practiced an echo and an EKG. It's My Heart had a child life specialist come and talk at our monthly meeting last month about testing and blood draws and that sort of thing.

We brought home EKG stickers, lubricant, heart monitor stickers, band aids, and a WONDERFUL doll called a shadow buddie. It is a doll with a scar on his chest and a scar on his heart. He even looks like Miles, except this one has blue eyes but has the red curly hair - he is perfect! We like him alot! Miles even sleeps with him. Well tonight his buddie had an echo (or a goo test) and a sticker test (EKG). Riley helped. He let Miles use the roll on deoderant (ultrasound probe aka camera) to take his picture. Then Miles let Riley take his picture. Then we put stickers on and practiced FREEZE! 1 2 3 4 5...They did great! Miles didn't really freeze completely but good enough for an EKG. He didn't scream when we took the stickers off (didn't do anything really). SO, SO proud of them!!! We are going to practice again before the appointment and hopefully we will do okay. This is the first unsedated echo - I have heard horror stories about how it could go. His appointment is at 9am - I could just bring him hungry - just in case.

I didn't forget about you...

Hi there everyone. I didn't forget about my blog, promise. I started a carepage because my family will check it if they receive an email that I have updated. Oh well, not everyone has bloglines...

So here are my super cute kids! This is a picture that they gave me for my birthday (yesterday). I just love it, they are the best! Thanks Abuelita for doing that, it was very sweet.

The It's My Heart Awareness Walk was a success!!! It was awesome in an out of body experience kind of way. In that there were all of these wonderful people there having fun, getting to know one another, sharing their stories, their children playing together...And I had a part in bringing them all there. WOW! That is so big! In comes the out of body experience part. It was great. The only part that I didn't like was when the health department got there to do their inspection (I was in charge of food). That made me a little nervous, but we did okay.

Thank you, Thank you, Thank you to all who donated to the walk and helped make it such a big success!!! The total is upwards of $24,000!!!!! If anyone remembers, that was more that I was paid when I worked for Harris County!

off to bed for me...

Becky

Okay, Okay so that wasn't an update...

...But! Be sure to read the post below about the It's My Heart - Heart Walk on February 17th... www.itsmyheart.org

All is well. Thanksgiving in KY was great, had a blast. Christmas was great, got completely spoiled by Santa (as it should be). On to the BP...The current thought is that Miles has secondary hypertension. There is more testing to come. He did a great job at the appointment (yea right! - there was alot of crying, screaming and laying on the floor). They took blood and we have more testing soon, a renal scan sometime in January. Then possibly medication to control it.

The funny part...I had to tell the doctor he was wrong. I didn't like to do that, really. I didn't want to be THAT mom. He had a student in there and he told her that Miles' heart makes all the lovely noises it does because his BT shunt is still open AND that it goes from his Pulmonary artery to his Aortic arch. SO...I had to say, "Actually Miles had a modified BT shunt and that went from his Super vena cava to his Pulmonary branch artery and they closed it during his repair. The noise you hear in his heart is due to his conduit that has moderate regurgitation and he has a fenestration." I really didn't want to do that but I had to. Plus - how can you (me) expect a doc to know everything about my boy the first time he sees him - I can't that is why I don't hold it against the doc - for Renal he was well informed about hearts, that is a good thing.

That is it with us. Hope all is well with you and yours. Happy New Year!

Happy Birthday Chris - my biggest sister :)

Update!

Dear Family & Friends,

Hi everybody! As most (or some) of you know I am a board member with an organization that I just LOVE called It's My Heart, Inc. We provide CHD families with non medical support, we have events and we provide about 1,000 comfort bags per year to Texas Children's Hospital.

That being said, we are having our very first Heart Walk!!! IMH Heart Walk, 2007, Noah's Legacy. Sadly, the president of our organizations son, Noah passed away in May 2006 so the walk is in his memory. The walk will be February 17, 2007. Funds raised through the IMH Heart Walk support community awareness and help to provide comfort bags and programs to families while they are hospitalized.

From the heart,

The Suggs Family

You can use Paypal, a quick and easy way to donate. Click here and click on the link for Donate Paypal. Please be sure to include my name.