Day three Post Op and feeling good

After months of waiting and praying for the twins surgery that was scheduled for October 31st, we have come out knowing that things we not as bad as anticipated, Praise the Lord!

Rewinding a few months, Caleb went in for a hernia repair and dental work back in June at Children's Hospital in Pittsburgh.  Once he was put to sleep and they were trying to pass breathing tube they noticed they were having a difficult time passing the size tube they generally used.  Both twins have subglottic stenosis, which is a narrow airway.  As they downsized the tubes a few times they called off the surgery and stated Caleb had an unstable airway that would have to be assessed before he could have these elective surgeries.

We arrived at the hospital on Friday with some anxiety as to the outcome.  The team came in and said they were going to do Isaac first.


Isaac:
He was having his airway checked out.  A Laryngoscopy, Bronchoscopy and a endoscopy to monitor GERD... Dental work with extractions and ear exam/repair.

Here was Isaac after his "happy juice" about to go back to surgery.

Isaac was due back in surgery for an hour and a half.  So we kept Caleb busy by going to a playroom and hanging out for a bit.  He loves to sit in these little red cars.  He is running out of room and soon won't even be able to get inside.  I may just have to contact the manufacturer and see if they make an adult version for my Mister Caleb.

Isaac procedure took a little longer than expected due to a bigger issue with his ear drums than they were expecting.  Dr. Mehta repaired a hole in the right ear but was unable to fix the left ear drum which is completely ruptured and needs a 2-3 hour surgery alone.  He said they could not add that to the OR schedule for the day so we will have to come back to have this done.  His airway looked pretty good, just under the normal size for children with Down Syndrome and his reflux looks managed.  As far as dental work he ended up having three teeth extracted from the bottom and the roots dug out from a tooth that broke off recently on the top.  Lots of sealants and a couple of caps on some back teeth.  He's a new boy!!

Caleb:

Caleb's team was very thorough when it came to dealing with airway issues.  They were looking at several different scenarios if they couldn't pass a breathing tube as was the case back in June.  I was very pleased with their detailed explanation of different steps they would take.

Caleb was having more procedures done under this anesthesia due to him being considered more high risk.  He was having his airway checked out.  A Laryngoscopy, Bronchoscopy and a endoscopy to monitor GERD... Dental work with extractions and ear exam/repair (all same as Isaac)... then he was also having a cyst on his neck removed and a hiatal hernia repaired.  It was not quite clear what kind of cyst was on Caleb's neck but that would be determined when they got in there to remove it.  

Calebs procedure was to take around three hours to complete.

Caleb chilling with his "happy juice "

After three hours had passed, the ENT Dr. Mehta came out to update his part of the procedure. He said that his airway was better than expected and it was indeed small but not in a terrible way.  He said it was measured and now documented in their system as to what size breathing tube to use with future operations.  He said that the cyst was not what they were expecting it to be (a thyroglossal duct cyst) and it was a much easier removal.  So from the ENT standpoint it was a good outcome for sure. An hour later the general surgeon came out and said the hernia was repaired and he was good to go, then dental came out next and said he had four teeth extracted and sealants applied.

Four and half hours later Isaac was still being a real trooper playing on his iPad, watching tv and letting time pass by.

We were pleasantly surprised when Caleb woke up in recovery and drank 8 oz of apple juice right away and then signed for more.  Usually Caleb takes hours to come out of anesthesia, not today, he wanted to drink and get outta there.  Children's had a bed space reserved for Caleb for an overnight stay and they even put in a second IV site for his stay while he was sedated.  When he woke up all of the doctors said that the surgery procedures all went better than expected and he was free for discharge if we were comfortable taking him home.  WOW!! Thank you Thank you, and we were off.

Day #3 Isaac is up and ready to tackle school again.  Doctors gave him today off school but he will return tomorrow with no gym class for a month until our follow up.  Caleb is not quite himself and slower to get around.  He is in good spirits and playful, but I can tell he is hurting a little yet. He will stay home with me all week and he too is off gym class and extra physical activity for a month.  I am so happy things went as they did.  I also wanted to thank each and everyone who kept the boys in their prayers and asked about them with genuine concern, we all felt the love.

This photo is them this morning sharing some iPad time together,

they are so adorable when they just chill together.

3 Surgeries in one month!! What was I thinking??!!

I guess I didn't realize how much I may have bitten off by scheduling three surgeries in one month.  Lots of pre-op testing and appointments have been keeping me busy.  Then I wasn't really considering recovery time AND the fact that we have a little three day family get away planned in the middle of it all that we've had planned since the beginning of summer.

Yesterday Caleb went and had a thyroid sonogram evaluation done just to make sure that the mass we found on his neck has nothing to do with his thyroid.  He was the model patient and he sat completly still and watched the images intently like he was watching his favorite cartoon.  Today already his ENT at Children's called and said that his thyroid looks great and they will go forward expecting that this is a Thyroglossal Duct Cyst as originally thought.  He said that he won't know for a fact that it is that until they get in there and see.  Best case its just a little mass thats not thyroglossal duct related and they snip it and remove it.  If it is a Thyroglossal Duct Cyst they will have to travel up to the bottom part of the tongue to remove cyst which will be a little more involved but not much.

Today Tristin went in for her pre-op appointment.  She will be having her tonsils out next Monday.  All other four children already have their tonsils and adenoids out and not sure how Tristin got missed but her throat has been a mess for months and the tonsil stones are record size....yuck!!!  We enrolled her in a case study to take and extra step in pain management.  She will apply a topical medicine to her entire neck four times a day for a week to help with pain.  Anxious to see how it works for her.  I have heard time and time again that the older you are the harder it is to get your tonsils out.  With Tristin being 17 she's considered an adult and has been warned that there will be some extreme pain for several days.  I still have my tonsils so I am no good at giving advice on what to expect.

Caleb and Isaac are both having surgery on October 31st.  This was the surgery that was postponed from September 19th due to conflicting schedules with surgeons.  Caleb will have five procedure done.  He will have dental work with extractions, ear tubes placed, an airway assessment done due to his surgery on June 16th that had to be cancelled due to unstable airways, the mass removed from his neck and a hernia repair performed.  Isaac will have three procedures done, the dental work with extractions, he has two perforated ear drums that they are going to see if they need repaired or left alone and a scope to assess his airway as well since they usually have identical issues all the time.

Both boys have Subglottic Stenosis (narrow airways).  We have known this since they were infants that they both have this condition.  This is something that should not get worse but basically just stay the same as they grow.  It is my understanding that the stenosis will grow with them but always be smaller than normal size.  When Caleb could not be intubated in June they came out and said he has a 60% narrowing, more than was on record from the last surgery.  They are assuming he has some scar tissue forming or growing from previous intubations, this is why they are going to do an airway assessment.  Since they are both at risk for intubation they decided to get as many procedures done as possible with this next surgery date.

Asking for prayers that all surgeries go well.  This will be Tristins second surgery (her first surgery was when she was two) and the twins, umteenth...really lost count....surgery.

S-l-o-w progress.... but PROGRESS is happening with the iPad

Our family has been blessed beyond words with help getting both boys an iPad for communication purposes. Being a larger family that always seems to have something "pop up" that uses unbudgeted money and yet still trying to find that "extra money" to purchase two iPads was not something that was about to happen easily or quickly. We were thankful that the Lord provided for us in other ways.

Caleb received his iPad from his shopping spree via Make A Wish and Isaac was awarded one through an amazing organization called Shane and Wyatt Down Syndrome Foundation.  This foundation makes it a point to provide iPads to children with Down Syndrome who are having severe communication issues.  Isaac was chosen as their first recipient, how cool is that!?  You can click here to read our blog post about receiving it.

Caleb and Isaac have now had the iPads now for a little better than two years.  I must admit I have been getting discouraged with their progress using it.  I just KNEW it was going to be our answer to better communication with the twins. They are both whizzes navigating the iPhone for apps and games and YouTube videos they want to watch.  They really are impressive!  We have chosen to use the Proloquo2Go app to try to facilitate conversation.   I had high hopes reading reviews of the software that this is the right match for the twins to use.  After downloading it and going through kindergarten with it I began to have doubts that we, the family, and the school were properly trained to teach the boys to use it.  For the past two school years the iPads have just stayed at the school each and every day and during the summer months the iPad was sent home for us to use with them.  Honestly, we didn't know how to use them.  We didn't know how the school had been using them, so how were we to replicate that and keep the boys active with it?  It didn't happen.  I was frustrated, mostly with myself for not knowing how to use them to help my boys.

We started this school year with a few tweeks to the IEP in hopes for the iPad to be our answer again for communicating with the twins.  About 3/4th the school year has passed and I still am not seeing or feeling the iPads are 100% properly being utilized.  Not that the school isn't trying with them, just that I was expecting and hoping for m-o-r-e.  So about two weeks ago I sent a letter to the teacher requesting that the iPads be sent home with them each day after school.  One concern with this is the possibility of breaking it in transit.... that would be bad!  Another concern is that we would use them differently at home than the school uses them there and perhaps confuse the boys.   The only way to find out how to use the iPad was to take the plunge and request it be brought home and use them.

This past week I have seen two different instances that are worth sharing and to get excited about.  Easter weekend was a great time to give them some alone iPad time.  Just to hammer out buttons and let them explore the different folders and talking options.  To be honest they like to push the same button over and over and over and over and over and over....get my point?  Then they laugh hysterically when they push the talk button and the iPad says the same word 25 times in a row.  Its quite comical to watch them.  BUT in doing this they are navigating their way through the program and finding new funny words to repeat over and over and over and over again. This is learning the device in my opinion, so we let them do it.  At school they really refrain from allowing them to push the button more than once as it really is a time waster and a distraction to the rest of the classroom, so this was fun for them.

Saturday afternoon Isaac was browsing around different subject and pushing random buttons all over the place.  Not really making any sense of anything but just having fun saying different words... THEN, he found the dessert button.  He pushed dessert 20 times and out of no where formed a complete sentence.  "I want ice cream sandwich dessert.... and signed Please!!!" Whaaat??  He had the biggest smile on his face and brought the iPad directly to me and said the sentence again.  "I want ice cream sandwich dessert...and signed Please".  You better believe we ran right into town to get that boy an ice cream sandwich and he was very happy that he was clearly understood with what he wanted.

Then last night we gave him his nighttime meds to make him sleepy and  gave him his iPad to pass some time and hopefully learn more of the folders and words within them.  I can already tell he is very smoothly getting around and realizing where to push to talk about family stuff or school stuff or feelings or food.. This is VERY EXCITING to watch.. THEN after about 20 minutes of playing around he found the feelings folder.  He pushed "tired" and "sleep" buttons.  He looked at me and signed sleep, put down the iPad and laid down for bedtime.... What??!!!! This may seem like a tiny progress note but to me its a big big step.

Looking back over the past eight years I can honestly say I have been discouraged with a lot of things. Thinking that this might not happen or that might not happen.  Perhaps feeling like we should give up trying a certain thing with the boys only to find when we are about at the end of our ropes trying desperately to make it work something they "get it".  It took us signing words to them for almost 10 months before we got one sign back from them.  The first word signed back to us was Cracker.. Caleb wanted a cracker.  When that happened we were all so thrilled and emotional.  Now that I am seeing some actual progress with the iPad I am having the very same emotions.  They are GETTING IT.... They are GETTING IT!!!!

By far the hardest thing about parenting children with special needs is for me to be patient and allow Caleb and Isaac to do their thing when "they" are ready, not when "I" am ready or when I know the other kids have done something by time wise.

I'm not giving up on you boys!!! Mama wants to talk with you and get to know even more than I already do.

Signing "hurt" for a year when taken to toilet?

Yep.  That's my Isaac.  My sweet little love bug who is everyone's best friend, or at least tries to be.  We have been introducing potty training to the twins for a little better than a year now.  Our twins are 7 year old identical boys.  They are both non-verbal, have Autism, Down Syndrome and Sensory Processing Disorder. Due to the assortment of diagnosis' the twins have we have not been to concerned with pushing them to toilet train. They are delayed in all areas already and we knew that potty training would be a difficult area to concentrate on when they were totally not ready.

We began introducing books and videos at about 5 1/2.  Then we taught them the sign for potty.  We showed them where their pee comes from and told them why they pee.. We let them stand by the potty before bath time and asked if they needed to go.  They watched daddy go and thought it was funny.  Caleb started to "try" a few months ago and has had some successes.  Isaac however, always seemed really resistant and didn't want to.. As the months went on and Caleb was starting to go more and more (still not trained today) we decided to push Isaac a little more.

It was at that time that Isaac began signing "hurt" when he was trying.. HURT?!! no that shouldn't hurt honey.  "Its a different feeling but you can do it" we told him.  This continued on so we talked to pediatrician and behavioral specialist.  The guess was that he was perhaps trying to push the wrong way and was pushing to have a BM.  Perhaps Isaac was associating his chronic constipation pain with standing at the potty and pushing and hurting?

We went with this theory for awhile.  They started kindergarten in the fall and part of their daily routine involves trying to go potty twice a day.  The staff documents if twins' diapers are wet, dry or dirty.  They also comment on if they went potty or refused.  On Isaac's paper, signing "hurt" was a daily report.  We began to wonder if he was just signing hurt to get out of going potty.

I basically woke up this week and thought, that's it.. Why would a child who most likely is not capable of signing a word to intentionally get out of doing something keep signing that word?? If he was signing Hurt, then doggone it... he must hurt!!!

I took him to the pediatrician again yesterday and I said I want a total work up on this child.  I want bladder, kidneys, penis, all the plumbing checked out.  I want to rule out any pain before we move forward with potty training.  Isaac is under the care of a urologist for retracting testicles but they have never really examined the structure of this man parts.  The pediatrician said she would start there and go forward if everything looked right.  

She grabbed her flashlight, we held down a screaming boy and she had a look.... Uh Huh... right away she said that we needed look no further.  She said to go ahead and call Childrens Hospital in Pittsburgh and have the urologist take a look.  She was certain that Isaac has Meatal Stenosis.  Well, that's a new word for us..

She explained that sometimes boys swell up after circumcision as an infant and it fuses the urethra together.  Its often caught around the age of two when typical children begin toileting.  UGH!!! My Isaac is 7 1/2 and we are just now finding this?? Poor bugger, he really does hurt when he tries to pee.  The doctor explained that it feels like a UTI without actually having a UTI.  The urge to pee is there but often can't go.  Its like going the the bathroom through a pinched straw.

Listen to Me...

So as I sit here typing once again feeling  regretful for not "listening" to my child who is capable of communicating through sign language, I am waiting to hear back from urology.  I am hoping that they can get Isaac in sooner than later to give this poor boy relief.  From my understanding it is a quick 5 minute surgical procedure that is followed by full recovery.  The only downfall is that anything requiring anesthesia for my twins must be done at Children's Hospital due to their moderate Subglottic Stenosis.. narrow airways..

Mama is sorry baby boy :(

Risk higher than Reward... Tonsils and Adenoids

After waiting three years to get the twins tonsils out.  Getting second and third opinions.  Being told the "the risk is higher than the reward".  And having countless worrisome illnesses...... They got their tonsils and adenoids out last week.  Tuesday, July 31st to be exact.  Four days later we were able to go home. Here is a run down of our crazy week:

Monday:  waited for our surgery time phone call that came around 2:30 pm.  Arrival time in morning was to be 6:45 am.  We had made prior plans with my good friend Betsy to stay with her this night to be closer to our destination for Tuesday.  I tried to give subtle explanations to boys on what was about to happen to the without giving them to much information.  When Tom arrived home we made our way to Pittsburgh for the evening.  As the boys "Last Meal" we took them to their favorite restaurant, Burger King, for their favorite sandwich a Whopper Jr.  Caleb had a front tooth that was terribly loose and I kept asking Tom if he should just go ahead and pull it so Caleb doesn't swallow it.. I have HUGE tooth fobia.. I haven't pulled any of my kids teeth yet;  Tom said since he was being put to sleep in the morning we would just ask them to do it. When Caleb started his Whooper Jr. the tooth was there, when he finished it was not!!!

Tuesday:  5 am wake up time, and our day begins.  We get to hospital and boys are excited to play with toys in waiting room.  Called us back promptly to begin vitals and getting them ready.  As we are going over information about procedures for both boys I realized there had been an error with Isaacs surgery.  He was to have tonsils and adenoids removed and third set of ear tubes placed AND dental work done.  The dental work was not on schedule and quite frankly it was an emergency that he get his teeth looked at while sedated today.  To back up five days, Isaac had an ER trip that totally stumped mom and doctors as to what was wrong.  I thought it was constipation related, it was not.  They check for UTI, it was not.  After giving him some Motrin and settling him down they sent us home.  Next morning we awoke to the left side of Isaacs face is swollen from his eye to his chin.  Back to doctors office to which they "guessed" it was perhaps an abscesses tooth. So I called Children's Thursday and had dental jump in on Tuesdays planned surgery.

It did all work out and we are thankful because Isaac ended up having four teeth extracted.  One of which was most likely the cause of the facial swelling, the other three were baby teeth that needed to come out because the adult teeth were erupting.

Isaac enjoying his room with a view before surgery

Close up of my cutie Isaac on Verset

Caleb having a hard time holding up his head on the Verset

And he's out... daddy putting on his ID bracelet that he wouldn't allow on before this

Both boys were in recovery by 11am.  

We were informed by the ENT that Isaac did not receive ear tubes again as expected.  His right ear they removed the tube and cleaned out the ear wax and found a hold his in ear drum so didn't place tube.   When he looked into his left ear he found a large hole that concerned him.  He stated that we would have to do a hearing test when we came back into his office to see if there was any hearing damage.  He stated that there would have to be something done about this problem, but did not offer options just yet.  Hours of sleeping off anesthesia and they awoke in rater happy moods.  

Love Isaacs cute lil toes peeking out

When asked if they wanted a drink Isaac refused, Caleb was given the option of milk or apple juice.  He chose apple juice and drank one.. then two... then three... then four!!!.... then FIVE.. That is more apple juice than he has ever drank in his entire life??!! WOW I wasn't expecting this.

Wednesday;  Both boys woke up a little more tender than the day before.  Both of them offered drinks in the morning and again Caleb signed Apple Juice and enjoyed his beverage while his brother just looked on.  And from there it went downhill... they ate their ice cream for breakfast, lunch and dinner and no drinking.. we were told that the ice cream counted as a drink so we tried as often as we could to feed it to them all the while hoping that they would not get sick of ice cream before it was over.

Isaac

Caleb

Thursday;  Today was the kind of response I was expecting from the get go.  Today the boys had to be coaxed for everything.  They were refusing to drink, refusing to eat ice cream and basically sleeping all day long perhaps to avoid the pain.  When I voiced my concern on their pain level today the nurse explained to me that it was not uncommon for children with Down Syndrome or Autism to have a delay in pain.  Unfortunately, we have a double whammy with this.  It was a day for mommy and daddy to just cuddle with them and try to keep them comfortable.

Caleb yelling at me to STOP taking pictures

Praising God that we had an iPad to entertain them

By the evening assessment Caleb's heart rate was elevated and he was showing signs of dehydration.  We were told to try to get anything in him that we could or they would be hooking him up to IV again.

Friday; Today when they woke up we were right on the drinking for them.  We offered them everything that was available.  Milk, Apple Juice, Choc. Milk, Rice Milk, Ice Water, Orange Drink... Finally, Caleb drank a full glass of rice milk.  We were being discharged!!! They suggested that sometimes kids do better at home in their own environment, and we agreed.  PLUS, we had to leave this day because we were to go and pick up Caleb and Isaac's brother and sister at Pennsylvania Christian Camp in the morning to bring them home from their week long camping experience.

little playtime before our car ride home

Saturday and Sunday; each day we are seeing improvements.  Isaac much more than Caleb.  Isaac is eating soft foods and drinking like a champ.  Caleb is drinking very little and refusing any food, but drinking enough to have a wet diaper.  What we have noticed the most is when they are medicated they are practically normal, without any pain or signs of discomfort.  They watch tv and hum like they are having a jolly ole time.  When it comes time for meds they turn into little tigers.  Scratching, headbanging, crying, screaming, pushing, throwing, you name it.  Isaac is doing WONDERFUL with taking his meds.  They are on Roxicet for pain and Amoxicillian for antibiotics against infection.

So was the Risk Higher than the Reward??  We are still in the recovery phases.  Tuesday through Thursday is the "watch them closely for bleeding" days, so I am on my guard for that.. but so far, other than the refusal to drink and eat they are acting better than I thought they would.  Seeing them in pain is heart wrenching, but usually when we give them their pain medicine they are good for about four hours.  I am so anxious to see how they are in a month.  They are snoring a little still, but I am certain that there is swelling.  Their breath is a little better already and I am a tiny bit hopeful that perhaps they will start talking a little more after they are healed up.

When Push comes to Shove... I'm a Shovin!!

Several things have been going on with the twins lately.  Almost to many things for me to even process how to proceed.  They were seen in November by ENT to review a sleep study we had done. Both boys have been found to have a mild sleep apnea.  Isaac's sleep apnea is obstructive apnea due to very large tonsiles.  Caleb's apnea is central apnea.  We are to follow up with the sleep study doctor for a second opinion on getting their tonsils out now or holding off.  Also at that time both boys have had enough ear infections for the year to qualify for tubes.  The ENT (who I love!) decided that since Caleb was due to go under anesthesia for dental work, he would go ahead and coordinate tubes and teeth and give Caleb another set of ear tubes.  Isaac on the other hand, he felt the risk of putting him under outweighed him having another set of tubes right now.  Fast forward two months and the poor bugger has had fluid on his ears since early December.  He's had two major ear infections, been on antibiotics once, two shots of rocephin and one ER trip.

Part 2.  We visited the eye doctor in early December.  At that time we were surprised to hear that the eye doctor has seen some optic nerve damage on both boys right eyes.  The twins have been experiencing some new self injurious behaviours lately.  They are poking their eyeballs... literally fingers in eye sockets kinda eye poking.  The eye doctor said that it was important that we get glasses back on the boys and perhaps that would prevent them from poking as much.  Their perscription had changed so much from our last appointment and she felt that was why they were throwing their glasses off again after finally getting them to keep them on all the time.  She was right!! We have had glasses again for about three weeks and we are gradually building up the boys wearing them more and more and the eye poking has pretty much stopped.  BEFORE the eye poking another sensory issue we have had with both boys is head banging.  The kind of head banging that would send a mom running to see if their child knocked themselves out cold from the hit.  Isaac will run from a 6 foot distance directly into the wall forehead first and knock himself back on his can.  Rarely does he cry.  Its like he's getting something out of it other than pain??  The eye doctor listened to this and also was concerned that maybe the headbanging could have resulted in the optic nerve damage so we are set for a sedated MRI to look at their brain and their eyes.  It was originally scheduled for next week, January 20th, but the scheduler overlooked something and double booked the boys.  The MRI has now been rescheduled for February 4th.

When I had the MRI department on the phone I had asked them if since Isaac was being sedated for the MRI is there anyway an ENT could come and put tubes in his ears.  They said that the MRI room was not a sterile room and that would not be possible.  So ok, I accepted that and figured Oh Well at least I TRIED.


Now this week Isaac has been head banging quadruple time.. No exaggeration.. if I were to count how many times a day right now we would be over 100.  Ever piece of furniture he walks past, dining room chairs, rocking chair, computer desk.. he bangs his head off of it.  When frustration sets in he runs for the nearest hard thing to ram his head into.. the kitchen cabinets, the wall, the bedroom door... and as a result this week he has a bruise on his forehead.  Rarely does he do this so much that it creates a bruise.  Its a small bruise, but a bruise no less.  After speaking to his Autism behavioural specialist today and brainstorming, I think that its become a running pattern when his ears are bothering him.  Last Saturday we had him to the ER and we were told that he has a double ear infection.  He got a shot of antibiotics and we were sent on our way.  I was supposed to go back to pediatrician this week to have them checked again BUT they had a stomach virus going on and I was not about to goto the doctors office and share our germs to get any more.  He is due to go back next week for a re-check from the last infection that did not clear up...so I'm holding off for now.

Today I got it in my mind that I think Isaac's headbanging is to the point of causing him harm.  I think that its time for another set of tubes and I was going to figure out how to get it done.  I called the ENT.  I explained the situation, I explained that he is due to come to Children's for an MRI and I was wondering if they could sedate him in the OR, put in the tubes and then wheel him down to MRI department to do what they need to do there.  The doctor said that would be fine with him as long as we can coordinate schedules with MRI department.  WOW!!  Glad I thought of it :)

So I am waiting for the MRI coordinator to call me back, but its looking good that we can get this done.  I love when I feel like I am truly advocating for my children in a positive way.  So as it goes right now....  Caleb will go for dental work and ear tubes on February 1st, then go again on February 4th for his MRI.  Isaac will hopefully be getting tubes and then his MRI on the 4th right after his brother.  Two trips to Pittsburgh in four days and I sure hope this solves some questions we have about the boys, both with the head banging and the optic nerve damage.

For those that don't know that my husband is a partner at a CPA firm, this is a hard time for us as his work schedule is so very busy.  He is so wonderful about putting the boys and all their Pittsburgh trips first and he does so without complaining even though I think that his office may frown upon him missing work during prime season. (Doesn't happen often)   Let's hope these two trips will be our last until April, but I'm thinking... follow up appointments may be required for both of them.  Hoping for the best outcome in both situations :)

Annual Down Syndrome Clinic Visit

Today we traveled to Pittsburgh to take the boys to the Down Syndrome Clinic.  I always feel so encouraged and ready for action after leaving this place.  Talking to a doctor (or our case this time a wonderful Nurse Practitioner) who's main job is dealing with children with Down Syndrome on a daily basis give us more confidence that we are doing everything right and giving the boys everything we can to hopefully make them as independent as they are capable of being when they are adults.

We had GOOD News today and BAD News today.  I'll start with the good. 

We were told that their receptive language is very good, to the point of high functioning good.  Their cognitive ability to process what they are being told to do was a pleasant surprise to Ms. Susan and as she put it, with their rough start they are doing wonderful.  The fact that they know and use approximately 200 signs was a huge bonus for them.  Our main push with everything now is to get aggressive outpatient speech therapy and occupational therapy which includes sensory therapy.  We have been on a waiting list for a new Autism clinic opening soon in Ridgeway called Possibilites... which is fully equipped for sensory integration dysfunction.. BUT we were told not to wait any longer and get them started right now.  So I will be making some calls tomorrow to set up an evaluation to get them started more local and ASAP.  Overall, we got the thumbs up for how well the boys are doing..  My main concern is speech and we were told that it still could very well come for them, don't give up and keep on doing exactly what we're doing... Keep on Keepin on, that's what we'll do.

Now the Bad News :(

When the boys have exams its often hard for the doctors to make sure their testicles are both decended.. Today it was confirmed that they do in fact need to see a urologist about getting the surgery needed to help out with this situation.  Isaac may very well need re-circumcised as we foresee issues when we try to start potty training him.. So I will be calling a urologist tomorrow too.  Then we are being referred to a new ENT as both boys have very large tonsils and she recommended we do a sleep study and remove the tonsils, but ask that we get a second opinion from the ENT about all of this and perhaps get another cookie swallow done on both boys to see how they are doing with drinking thin liquids.  If they are not aspirating we could stop thickening their milk everyday.  This would be HUGE!!!  We are also to consult with a podiatrist regarding one of Calebs toenails.  It is split the whole way to the cuticle and it never grows out, it just keeps splitting and splitting??  So it may be ingrown to the point of a surgeon needing to remove the toenail to let it start growing out fresh again...  And last but not least, the wonderful thing about Children's Hospital in Pittsburgh is that if you have a surgery scheduled with sedation and your kiddo's need any other work done they can coordinate as much as they can under one anesthesia, so if and when they go into surgery we will also schedule dental work be done on them.

So the little buggers have some issues with health that we need to address and get taken care of this summer, but hopefully everything is for the best and they will have a quick recovery from everything.  One interesting statement from today is that if they get their tonsils removed, it could possibly help with their feeding and swallowing issues AND with their speech... hummm, at this point anything sounds good to me to promote speech.

I am encouraged and proud of the boys at today's report of how well they are doing.  Its been alot of work for them and for us, but worth every minute of it.  Now if we can just get all the doctors appointments out of the way that we're going to have to goto and get the surgery over with, we can start potty training these smart lil buggers :)

Isaac's Post-Op Report

Surgery was Wednesday..

Thursday, Isaac was acting just like his own self, into everything, running around, falling down, getting back up and doing it all over again. I was surprised at how well he was doing. I did give him pain medicine morning, afternoon, and night. Maybe more for me..than him. He must have very high pain tolerance as he only got fussy a few time throughout the day. His TSS came and worked with him for 5 hours this morning, ate lunch, napped, got up and continued with his normal routine. Then he went to grandma and papa's so we could head out to a sign language class being given by our local Arc branch, and then home to bed. It was a rather good day.

Friday, I had decided to send Caleb to Stepping Stones (the twin's preschool for autistic children) without Isaac today. I was afraid that Isaac may get bumped or fall or something and hurt his tummy. So me and three kids were ready to head out the door and I started to get Isaac ready to hit the mall with me, Camille and Elijah. As I was changing his diaper I decided to remove his dressing from the surgery as it looked a little wet from drainage or something. We were allowed to removed it today. So I started to take off the corner and immediately sensed something was WRONG!! I incision was open. I was so scared I couldn't even continue to remove the bandage. I tried to put it back on and called the pediatrician to tell them I was coming right over after I dropped of Caleb. As soon as I dropped off Caleb to school the phone rang and it was the pediatricains office suggesting I call Children's and see where I should go, their office or the ER. They suggested I start at pediatrican's office. Once there, they removed the rest of the bandages and cleaned out wound and tried to put steri strips on the close it. No Go!! Off to Children's we go. The surgeon there explained to us that once you leave the OR which is a steril environment and have something like this happen we cannot close the wound back up because there would be to much bateria there and the possibility of infection was to great. So they taught us how to pack the wound, wet gauze, then dry gauze and tape. We have to change this three times a day and will go back to see him again next week. This will take two to three weeks to heal up. In that time there will be no baths, no swimming, and no rough housing... OH GEEZ. Caleb is in the tub as I'm typing this and its killing Isaac. Tom has to keep the door shut to the bathroom to keep Isaac out. Poor Guy.

Here is two photos I took tonight when we changed the bandages. It doesn't look as bad in the photos as it does in real life. Please keep him in your prayers that this heals up without infection and the scar will not be to bad. This is the whole reason for this scar revision surgery he had, to repair an ugly scar... :(



and you can see its not affecting him that much:

Isaac's Surgery is Over

Today was a very stressful day for all of us especially Isaac. I think the waiting is the hardest part for sure. We scheduled this surgery about 6 weeks ago and it was here before we knew it, but today was the longest day. We arrived at Children's Hospital at 6am. Pre-op stuff until 7:30, they took him back at 7:45am and surgery lasted until a little after 10am. He was getting some dental work done today and two scars repaired from when he was an infant in the NICU. The scars kept getting sores on them so they scrapped off the old scar, sewed him up with stitches on the inside and glued the top skin together. We thought the dental work was going to be the easy part...but...we were wrong. Once the dentist got in there they x-rayed his mouth and called us in the waiting room to explain that they found a little more than they anticipated. There were cavities starting between all of his teeth. Due to his big brother having bad teeth, and due to his Down Syndrome, and due to the fact that he has major sensory issues with his mouth he said he would be putting crowns on a few teeth instead of just filling them. Tom and I were like OK. Whatever you have to do is fine. So an hour and a half later they called us back to recovery and we were stunned at what we saw. Poor Isaac has ALL of his bottom teeth crowned and all his top molars crowned. The other teeth still exposed are the top front four teeth. Its quite a site to see. Don't get me wrong, we weren't upset about it, just a little stunned by the site of a completely silver mouth. I still have not gotten the greatest photo of that to share, but I will.

Until then, here are photos from today taken from my cell phone (what a day for me to forget my camera!!) Has anyone EVER seen a kid with all crowns?????

Make photo slide shows at www.OneTrueMedia.com