Going Potty At Grandma's House

Jonathan went on the potty for the first time outside of the house. He went to Grandma's house and used the potty several times. This is another great step for him towards being able to completely get rid of his diapers. Up until now he would only go at home. Hopefully he will continue to do a great job and progress over the next several weeks. The final step is to get him used to going on a big potty.

-Dina

The Boys Are Growing Up!

Since last weekend, Jonathan has only had 2 potty accidents while we've been at home. He is doing so well. Now if we can get him to go on the big potty and go when we are away from home, we will be set.

Since his surgery, Ethan has just grown leaps and bounds, hitting several milestones. First of all, Ethan is now crawling forwards and is very fast going everywhere, getting into everything including Jonathan's toys. We've had to close the gates and are now trying to teach Jonathan how to share his toys. He's having a difficult time with that one. Ethan seems particularly interested in Foster and Jonathan's Disney Cars toys, you know the metal ones. He likes to put them in his mouth, bang them together, and bang the floor. All of these things we don't want him to do with metal cars, so we've had to watch Ethan carefully. Second, Ethan is now pulling himself up onto things. He likes the table where all of our cups and toys are in the living room. He also likes to pull himself up onto his activity table and Jonathan's train table. We suspect he'll be cruising soon. Third thing Ethan is now doing is taking huge bottles (120-150 ml) all at once and is able to eat Gerber baby food a lot better. He's not spitting it all out with his tongue now, but is able to take in a bigger spoonful and keep most of it in. As soon as I am done with this supply of Gerber, we'll move on to more sophisticated stuff. I also will start him on dairy. First up is yogurt. We'll see if he's grown out of his dairy allergy. As far as his G-tube in concerned, we have not used it in 3 or 4 days now. The doc said if he continues to grow properly without using it, we can think about getting it taken out. Lastly, Ethan is crawling up and down the stair going between the living room and dining room. He's so proud of himself. He loves to look at us after he's done something and clap.

-Dina

And The Good News Keeps Rolling In

Another very good visit to Children's! This was Ethan's 2nd (and last) post-op for this surgery. His surgeon said he's healing up and coming along very nicely. It will take approximately 2 years for the scarring to finally settle down and heal. At that point, all the redness/pinkness/hardness should have finally disappeared.

We also met with Nutrition and his main Cranialfacial pediatrician. They are also very pleased with Ethan's progress.

As far as Nutrition is concerned, we are now devising a plan to slowly ween him off the bottle and on to 100% solids. The plan is to give him 3 meals a day of solids and alternate with bottle feedings in between, one first thing in the morning, and one just before bed time. We will be in touch with Nutrition in 2 weeks and then have another appointment to see them in August. They were all impressed that at this point almost nothing is going through the G-Tube and he is almost being fed 100% orally.

There is now talk of when to take the G-Tube out. G-Tubes in general have a very short lifespan and need to be replaced every 3-6 months. We are at that point now as his seems to be leaking - if you take the cap off (or as is the case with Ethan - he pulls it off or scrapes it open as he's crawling), it will leak somewhat. However, since he is doing so well with his oral feeding, the thought was to not replace the tube yet. We will simply leave it in for now (since we hardly use it) and save him the trouble of the replacement.

Replacing a G-Tube is a simple procedure that is done in clinic (i.e. no surgery required) - they simply pull out the old one and pop in a new one. However, it does take some force to pull out a G-Tube and I am sure it is about as enjoyable an experience as a swift hard boot to the head. It was felt that it was better to spare Ethan the experience and leave the old one in as it may be simply discarded within a few months anyway.

The criteria for removal is 2 months with absolutely no use of the G-Tube and no loss of weight or fall off in his growth trajectory. We are not there yet, but we are getting very, very close.

We are now not due for another appointment with his CF pediatrician for another 12-18 months - that's how well they felt Ethan is doing. The CF pediatrician will still of course be appraised of any other goings on (i.e. what Opthamology will have to say in August, if ear tubes are required (for drainage), when his dermoid surgery will be scheduled, etc.) but he felt he didn't need to actually see Ethan for over another year.

His plastic surgeon also said that there was no real need to see Ethan again until another 1-2 years. At that point it will be to simply evaluate how the scar is healing and to see if anything has changed in terms of his jaw development. His assessment at this point is that Ethan will be evaluated at age 7-8 to see if any surgery is required on the jaw. It is still quite possible that at that time, they will say that nothing needs to be done until adulthood.

One thing to note: because of the mandibular hypoplasia, Ethan will definitely have an overbite. How severe it will be and if any corrective measures are to be taken will be monitored and assessed primarily by his pediatric dentist.

We also discussed the possibility of speech therapy and any spinal issues (recall that Cranialfacial Microsomia patients can develop upper spine abnormalities). They felt that based on what they saw today, Ethan should have no need to see a speech therapist (however, it is something we will continually monitor and if required, he will be reassessed at 18 months). His spine looked fine and here too, they thought that there was very little risk of any bad surprises occurring.

So to sum up: Ethan is healing and recovering from surgery very, very well. The doctors are all pleased with his progress to the point that they don't feel the need to see him again for another year or more. The only things left on the near term horizon are the dermoid removal, the possible insertion of the ear tubes, and Nutrition's ongoing assessment to plan to get him off the bottle and get rid of the G-Tube.

- bob

"Uh Oh. I Have To Go Potty!" Jonathan Officially Potty Trained!

This has become the new montra in our household. Jonathan is now officially potty trained...at least if we are home. We went to church today and he didn't ask to go, but as soon as we got home, he said, "Uh oh. I have to go potty!" and ran upstairs with us and went. The diaper he was wearing was wet though. We will continue to diaper him when he is sleeping and when we are out for now. We did buy him a training seat for the big potty. Hopefully we can get him used to sitting on that at some point. For now, we are just so thrilled that he is doing so well at home. No accidents again today!

Jonathan also ran upstairs and went without Bob or I sitting there with him for the first time. He told me that he had to go, but then he ran upstairs without me and did his business. I caught him running around naked from the waste down.

I find it rather humerous that Jonathan says "Uh oh" and then says he has to go potty. I don't know where that came from, but the phrase gives his statement a sense of urgency and we always go running upstairs as soon as he says he has to go.

-Dina

Ethan's Feeding Has Greatly Improved

A couple of days after Ethan's surgery, I noticed that his oral bottle feeding had increased. Now that we are 2.5 weeks post surgery, his feeding in general has greatly increased.

Before the surgery, Ethan was sleeping through the night from between 10:00 pm and midnight to around 9:00 am in the morning. I would gavash him around 3:00 am or 4:00 am. After the surgery, Ethan started waking up between 1:00 am and 2:00 am. I would feed him and he would go to back to sleep until 9:00 am. I would still gavash early in the morning too.

During the day, Ethan was getting a lot fussier too. I started increasing his bottle feeding volume by several mL six times a day and have since jumped up to 150 mL today, which he actually took and kept down. He used to be very volume sensitive, but it now appears he is able to handle an increased volume. At one point, I fed him green beans and bananas and he still took a whole bottle an hour later.

Along with the increased bottle feeding, he is also taking more solid food. Now I am a little concerned that he is eating too much :) Since I tried 150 mL today and he handled it, I am going to try and give Ethan 5 bottle feeds a day of 150 mL of milk instead of 120 mL 6 times a day and see how that goes. We go in for an appointment on Monday where we will talk to his nutritionist and discuss how to proceed from here.

-Dina

Jonathan Is Officially Potty Trained!!!

Jonathan has been in underwear for several weeks now, but it has only been since yesterday that he has been consistently going on the potty. Yesterday he only had one accident. He peed seven times and pooped three times on the potty. Today we are accident free. I think I can officially say that he is potty trained. We are so proud of him!!! Next up is getting him to go on the big potty. One thing at a time though.

-Dina

Before And After Comparisons

Here are some better pictures of Ethan before and after his surgery.

	Before. Look at his mouth and ear tags.
	After. Look at his closed lip and no ear tags.

	Before
	After

The scar next to his mouth will continue to lighten over the next year or so. We are covering it with a silicone patch. He does not have it on in these pictures. We have not been able to see the scar where his ear tags were because it is still covered with steri strips.





Above: Before
Right: After






Ethan is doing very well. He continues to make great progress in his recovery. He also continues to make great progress in his oral bottle feeding and gross motor skills. He is taking all of his feeds from his bottle, sometimes even the middle of the night feed and still acts hungry. I have increased his intake volume. Ethan went a couple of whole days without using his G-Tube at all. The next step is to start Ethan on solids again. He was eating solids before the surgery, but has not had any solids other than a baby rice cracker since his surgery.

-Dina

Stitches, Stitches No More Stitches!

Ethan got his stitches out today and he looks great!!! Bob thinks getting the stitches out was a major improvement in Ethan's appearance. I think it looks better because he doesn't look like he has stubble. The stitches were black, so it looked like short hair growing out of his scar. Of course as we expected, Ethan was VERY unhappy about getting his stitches out. The nurse swaddled him and then another lady held Ethan's head still. I stood right at his head so he could see me, but I hate it when he cries really hard and looks at me with those sad eyes which say to me, "Why aren't you helping me Momma!" Once the stitches were out and he was unswaddled, he calmed down.

Ethan before surgery 5/30/10

Ethan post surgery 6/8/10

Ethan after his stitches were taken out 6/10/10

As of today, we were given the ok to stop using the arm restraints. It is now ok for Ethan to put certain things in his mouth as long as the object can't hook his mouth and catch on the scar. He still has dissolvable stitches on the inside of his cheek, which are supposed to go away within 2 weeks of the surgery. He also has steri strips and dissolvable stitches where his ear tags were taken off. We will just wait until the steri trip falls off by themselves with now further action needed. As of today, it has been exactly one week. We were also given some silicone patches to put over the scar. The silicone is supposed to help the scar heal faster and look better in the long run. We are supposed to keep the scar covered at all times for several weeks unless he is being bathed or fluid gets under the patch.


Ethan's next appointment will be a follow up with his plastic surgeon and a check up with his craniofacial doctor and nutritionist on June 21st. I am hoping to get Ethan off of his overnight feeds soon. Then we will have all of July off with no scheduled appointments at Children's. He may restart working with his physical therapist again in July to help his oral mobility and scar treatment, but we will discuss this with both his surgeon and therapist as we get closer to July.

Ethan's appetite has certainly returned as well. He is eating his full feeds orally and still acting hungry, so he is doing very well in this area. I am rarely feeding him through his G-tube during the day, only using this method once for his middle of the night feeding, which we are still required to do.


-Dina

Poor Ethan

For two weeks following his surgery, Ethan is supposed to be wearing arm restraints most of the day unless someone is watching him very closely holding his hands. He definately has to wear them sleeping and while riding in the car since no one is able to watch him at those times. So far, we have been able to allow Ethan to play throughout the day without them on since Bob's parents are here helping to watch the boys. I have personally caught him several times trying to put toys into his mouth. When I tell him not to do it, he gets upset and cries at me. When I put the retraints on, he usually gets very upset with me too. I hate putting them on and feel so bad, but I know that this is a very temporary thing. I also know that the restraints will prevent him from ripping out his stitches and ending up back at the hospital.

Poor Guy!

It's Amazing How Quickly Ethan Recovers! Dina's Experience

Just 24 hours after Ethan's surgery, he was ready to leave the hospital. This is so amazing when one considers just how much was done during this latest surgery. We figure Ethan's surgery wrapped up between 6:30pm and 7:00pm. By around 6:00pm the following day, he just perked right up and was ready to go home from the hospital. This after a REALLY rough night and an iffy morning and afternoon. This seems to be Ethan's norm though considering he perked right up almost 24 hours after his G-tube insertion surgery, where he stayed even longer in the hospital.

The following is my experience with Ethan and some of the infomation Bob has already posted.

We arrived at Children's at 2:45pm June 3 after dropping Jonathan off with my Mom. My Dad met us there. Ethan was a very happy boy this whole day and he loved looking around at everything at the hospital. The three of us took some "before" pictures of Ethan.

Ethan and Daddy.

Once we were called back to the pre-surgery green area, we had to get Ethan ready and "meet with all the players involved" as they put it. We met with the nurse that would be with Ethan during the surgery, Dr. Hopper the plastic surgeon, his fellow Dr. Combs, the Ear, Nose, and Throat fellow, and the anesthesiologists. Dr. Julie Humsi was one of them (are anesthesiolgists doctors?) and she was the one who explained everything to us. The anesthesiologists are the ones who made the decision whether or not I could go back with Ethan while he was going to sleep. Ethan was clapping at grandpa and really happy. My friend Christy showed up right before Ethan was called back to the OR.

Once we were in the OR, Ethan put up a really good fight. He was looking around and playing for a few minutes, but once he realized that something was about to happen, he started crying. The anesthesiologist put the mask on while he was still sitting up and he kept pushing it away with both hands. Eventually he laid back and his eyes rolled up into the back of his head. He was still screaming though for a few more seconds and he eventually calmed down a little. His body was still moving around though and I was told he was asleep but the reason his body was still moving around was that his brain hadn't caught up yet. It was very interesting watching this whole process. I am so thankful that I was allowed to be there this whole time and was not rushed out like his previous surgery. They told me to give him a kiss before I left.

We were originally told to wait around the pre-surgery area since Dr. Perkins (the ENT) was only cleaning out Ethan's ears and checking for fluid that he would come right out and talk to us. Apparently getting an IV into Ethan took longer than expected so we were told to go ahead and wait out around the hospital. We went to the cafeteria. While we were waiting to be paged, Scott and Ellen (family) showed up. It was wonderful having visitors during the surgery because it really kept my mind off Ethan. After an 1 hour 7 minutes, we were paged to return to the pre-surgery area. Dr. Perkins came and told us that his part went well though Ethan still had fluid behind his eardrums and would probably need to have tubes at a later date.

After another hour, Dr. Hopper came and talked to us for a bit. He had decided to snip the lower and upper frenulum instead of having the ENT do it. He released the lower, but thought the upper was more severe. We were not planning on releasing the upper at this time, but it had been discussed. Everything else went as planned except he was unable to fix his dimple due to the fact that it was not caused by underdeveloped muscle, but rather was "thin skin".

We also had to wait for the anesthesiologist. Dr. Humsi explained to us that they had a hard time getting the tube into Ethan's throat and explained her theory as to the cause. She also said that intibation was a problem in his previous surgery too, which was written in his chart, but we were never told this. We were told he did great with the intibation so I am glad that Dr. Humsi made us aware of the situation. This information will be important for future surgeries.

By now my brother Andy and his wife had arrived, but Scott and Ellen had left. I got Ethan's room assignment and we all walked over to the patient rooms in Giraffe from Whale. Ethan was sharing a room with an newborn. He arrived in the room around 8:30pm and was expectedly fussy. Everyone was able to see Ethan, but visiting hours had ended so they all left shortly after he arrived in the room. Honestly I was very surprised at how long his scar was. I was expecting a little "Z" shaped scar where the lip repair was, but it was longer because of the muscle repair. He was still bloody around his mouth and ears with black stitches around his mouth, blood, and black marker on the opposite side of his mouth (I thought they were stitches at first), while there was blood and steri strips where his ear tags had been. I would have started crying if it weren't for people being with us. He also looked bigger as he was pumped full of fluids.

Ethan right after surgery.

After Bob, Ethan, and I got settled in, Bob left to go pick up Jonathan. Ethan started crying on and off during this time and had that really sad sounding pain cry. If you've never heard a young child cry in pain after a surgery, let me tell you...it is a very distinct cry one that is unmistakable. I heard this cry on and off all night long. The nurse got permission to allow Ethan to suck his binky (not normally allowed after this type of surgery), but binky is his second favorite comfort only behind being with me. Around 10:45pm, Ethan took 90 mL of Pedialyte out of a bottle. The nurse was very pleased and mentioned that most children who have mouth surgery don't want to eat orally for 24 hours. This was very encouraging and the fact that he kept the Pedialyte down.

I held Ethan for hours, but finally decided to put him in the bed. He slept for a while, but cried on and off all night only sleeping well for about 2 hours. He also had arm restrains put on so he wouldn't tough his mouth, but unfortunately the restraints were way too big so his hand didn't even stick out the end. Ethan was taking small amounts of breastmilk and was keeping them down all night.

When Dr. Combs came to visit in the morning, he said that we should just watch Ethan throughout the day and see how things went. The goal for the day was pain management, which we would have to control before he could be discharged. Ethan also had a reaction the the narcotics-itching.

Ethan the day after surgery.

First time Ethan shows off is new smile.

Ethan's latch on the bottle is much improved. He loves to feed himself. What a big boy!

Slowly throughout the day, Ethan got a little more active and I got a stroller so I could take him for walks. I thought this would be a good distraction for him. He continued to take small amounts out of a bottle, but the nurse wanted to give his tummy a rest so we did not gavage the entire time he was an inpatient. The nurse said they were looking for him to only take 50% to 75% of his feedings in order to go home.

In a stroller going for a walk around the hospital. Ethan needed a distraction from being in his room all day long.

Around 10:00am, Ethan's feeding therapist Suzy Hutchinson came to visit as well as Dr. Hing and Dr. Kelly Evans who is Dr. Cunningham's fellow. Everytime we come to see Dr. Cunningham, we see Kelly (she prefers to be called Kelly) too. She's awesome! They just wanted to see how Ethan was doing.

We walked all over the hospital throughout the day as Ethan got better. He got so many comments about how cute he is. He would even occasionally flirt with the nurses. We realized that we had to give him his pain medication right on time or else he really complained. Once we realized this, the nurse wanted to make sure we gave Ethan his meds before he felt pain.

Dr. Combs came back around 6:00pm and checked out Ethan's progress. He cleaned off the blood and the wound. He taught me how to clean it and how to care for it. This was around the time Ethan just perked up. Even his nurse mentioned that this was the most active she'd seem him all day. Dr. Combs cleared him to go home at that point, though we were not being kicked out. He made sure I felt comfortable with everything.

I called Bob and told him to come pick us up at that point. We were waiting for some better fitting arm restraints and meds before we could go. While I waited for Bob to show up, I watched the Miracle Makers telethon for Children's Hospital and I have to say it was kind of surreal being at Children's while watching their telethon. Dr. Hopper and Dr. Cunningham each were featured on the show though. That was pretty cool. He's so blessed to have these wonderful docs.

When Bob showed up, the nurse did the teaching and then we were ready to leave. Ethan got his IV out and a new change of clothes and then we left around 8:30pm. We got home to find Jonathan and Bob's parents waiting for us.

Thank you so much to all the surgeons, doctors, and nurses who made this experience such positive and successful one and I am greatful for the care you gave to Ethan!

-Dina

The Evening After

It's been just over 24 hours since Ethan has come out of surgery and he already seems back to his normal self. Granted - this is also while on pain medications. But at least his pain is under control and he seems quite comfortable and quite himself.

As per the doctor - the muscles that were repaired around the lip in the surgery are already functioning. He actually already has a fairly strong suction on the binky. This bodes quite well for further progress on his oral feedings and with luck, we may yet be off the G-tube by the end of the year.

The overall bloatedness of the (now not so) little guy (due to all the fluids pumped into him during surgery) will take a few days to subside (i.e. several days for him to pee it all out). The swelling on the right side of his face (where the macrostomia repair took place) has increased as per what the doctor said would happen. This should disappear over the next few days on it's own.

- bob

The Day After

According to the doctor during this morning during rounds, Ethan is healing very nicely. However, he had a very rough night (very cranky/irritable, did not sleep well). He may or may not come home today. It depends on how well his pain is managed and how comfortable he seems. The doctor will come by to check on him later in the afternoon. If he is doing better, he will come home. Otherwise, they will work on his pain management and he will be home tomorrow.

Captain's Log: Supplemental
There is a chance Ethan will come home tonight. Next scheduled pain medication is 5PMish. Then they will evaluate how he does. If all goes well, he will be home tonight (ETA: uncertain). If not, sometime tomorrow (hopefully). My folks will be in town shortly (like within the hour) to help out.

Captain's Log: Supplemental
As of 9:25PM, Ethan and Dina are now home!

- bob

Surgery Day

Ethan's first major surgery to fix the Cranialfacial Microsomia was today (6/3/10). The surgery went well and there were no surprises. Total time was about 2 hours. On the docket for today:

Fix the macrostomia (wide mouth)

Fix the underlying muscles around the lip (part of the macrostomia repair)

Excise the ear tags

Fix/remove the dimple on the side of his face near the macrostomia

Clip his frenulum (to enable more range of motion for his tongue)

Clean out his ears

Examine his ears for fluid buildup/retention

Everything but the dimple removal was completed successfully. The dimple was originally thought to be the result of the abnormal musculature around the lip. It turns out it is "thin skin" as the doctor put it. So removal of the dimple would entail cutting it out and basically replacing the dimple with a scar - so the doctor decided to leave it alone.

Otherwise everything went well and as planned. Stitches at the site of the surgery where the macrostomia was will be removed next week. They will send us home with arm restraints (so he can't pull/yank on his stitches) as well as pain medications and creams/topicals to help with healing at the various surgical sites to minimize scarring.

The ENT surgeon did note that there was in fact fluid in the ears and tubes will most likely be needed. The procedure is a simple one and apparently can be done in about 15 minutes so if it is decided that we should procede along these lines, the tube insertion will most likely be appended to his eye surgery (to fix the dermoid). This surgery will probably be in the Sept./Oct. timeframe. The fluid in his ears will impact his hearing so I am fairly certain this is the course of action that will be taken.

If all goes well and according to plan (and so far it has), Ethan will be home sometime tomorrow. Dina is staying at Children's overnight with Ethan while I will stay home with Jonathan. (If anyone is wondering, Jonathan stayed with Dina's mom all day - a big thank you there!).

One interesting thing to note: it took the surgical team over 20 minutes to get the IV into Ethan because he's so chubby (baby fat). Apparently this is common: from between 9 months to 18 months, it is the hardest time to get an IV into a human being because of all the baby fat.

In the following pictures, if you notice that Ethan looks bigger overall post surgery, it is not your imagination. They pumped a lot of fluids into him during surgery to make sure he kept hydrated/electrolytes in balance.

Ethan and his Most-Absolutely-Most-Favoritest-Person-In-The-Whole-Wide-World (aka mommy) - pre surgery.

Ethan and mommy - post surgery.

Ethan post surgery. You can clearly see the stitches and surgical sites. The site on the side of his mouth appears large but is actually about right when you stop to think about it: 1/2 of that is where the mouth used to extend to, the other half accounts for where they did the repair to the muscles around the lip. And if you are wondering, the doctor gave the OK for binky immediately after surgery.

Ethan's diaper as it came back from surgery with him (they retain it to weigh it to monitor fluid intake/retention). As I've always suspected - used diapers are a dangerous form of biological warfare.

- bob

Ethan's Surgery Tomorrow

Ethan's surgery is scheduled for 4:30pm tomorrow. The surgeon thinks he may be running ahead of schedule so he has requested that we arrive at 2:45pm with the possibility that the surgery may happen earlier. The main part of the surgery will be perfomed by Dr. Hopper, the plastic surgeon. He will repair Ethan's macrostomia (lip), repair his lip muscles under the macrostomia, and take off the ear tags. Another doctor that we have not met will perform the other part of the surgery, Dr. Perkins. Ethan's regular ENT doctor, Dr. Sie, was unavailable to do surgery tomorrow. Dr. Perkins will snip Ethan's frenulum and clean out his ears. He will also check to see if Ethan has any fluid left in his ears from an earlier ear infection.

-Dina

Jonathan Is Having Success

When Bob went on his trip last weekend, I decided to hit the potty training hard with Jonathan by putting him in underwear. After 4 days of potty training and being in underwear, Jonathan finally told me he had to go potty and went in his potty without having an accident. That happened last night and we are so proud of him.

Today, he went most of the day without an accident and even had more successes. We are so proud of him!

-Dina

Meeting Mr. Hockey

This Memorial Day weekend, I had the opportunity to meet the one and only Gordie Howe - Mr. Hockey himself! The opportunity to meet one of the greatest hockey players to have ever lived/Wayne Gretzky's hero was very cool indeed! And yes - that's a signed puck I'm holding.


- bob