Eat Happy!

Eat Happy!

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Tuesday, October 30, 2012

Halloween Hurricane

Monday and Tuesday were a cold, wet, windy mess! Hurricane Sandy swept through the entire eastern seaboard. As residents of the DC metro area, we certainly were in the line of fire for the storm. While not hit as hard as NYC and NJ, Washington DC did have some serious damage as well.

Gloomy Day

The winds were strong enough to knock out our power and rattle the windows here in northern Virginia. Tom, Ian, and I spent most of the day reading books, watching videos, and playing games. We lost power at 6:30P. When the power went out, Ian seemed unfazed. His only concern was that Thomas the Train went away. He didn’t seemed to be scared. We had to make sure he was nearby the candles. He kept wandering around the corner looking for things.

"It's the Great Pumpkin, Charlie Brown"

We gathered everything for bed and finished his routine. The three of us snuggled up in our bed. tom was just getting ready to hook up the pump for Ian’s overnight meal when the bathroom nightlight came on. Our power was only out for about two hours! We were very lucky! Of course, Ian was a bundle of energy. He was jumping on the bed and falling over all the pillows. Ian loves pillows!!

Oooooooooo, Spooky!!

Pillow Time

We decided to give Ian a try sleeping in his bedroom. He has the corner room and the wind hits the bedroom side of the house (his and ours) very strongly. We back up to a field and that side of the house is first in line for the wind tunnel. Often, Ian wakes up crying from wind against his bedroom walls. Ian must have been very tired because he slept with no problems. He only woke once. He has still been having some throat pain and belly cramping form the antibiotics. 

Today (Tuesday), we had another lazy day. It did rain all day. Tom has been home the last two days because of the hurricane. It has been really nice to have two full family days, just us three. We had fun watching a few more videos and playing Sesame Street.

Playing Letters and Numbers Matching

Tomorrow is Halloween. Ian is having a costume party at Preschool. We practiced his costume a bit the other day. He is an Angry Bird. We wanted to make sure he had enough plastic bags to “fluff” him. He looks adorable....... and not the least bit angry. We are planning to trick-or-treat for a bit tomorrow evening in the neighborhood.

The CUTEST Angry Bird that ever was!!!

Saturday, October 27, 2012

Adios Adenoids and Toodaloo Tonsils

A Timeline............



Thursday, October 18th

We arrived very early in the morning for pre-op. The surgery was scheduled for 7:30A, the first case. The surgery went well. Ian's tonsils and adenoids ended up being abnormally large enough that they were sent off to pathology. He seemed to be doing alright afterwards. They were keeping his pain under control by narcotics...... Vicodin to be exact. It seemed to be helping. He slept well that night.






Friday, October 19th

Ian came home the next day. We were a little concerned about coming home so early. Things had run the routine stay and Ian was discharged. I had a bad feeling about the next week. Ian did a lot of sleeping when we came home. The narcotics not only relieved the pain, but gave him a chance to nap, a lot!




Saturday, October 20th

Ian slept until 10:30 this morning, day three post-op. He was up at midnight and 4A with episodes of coughing and retching, and lots of crying... from all the mucous in his throat and nose. He was so extra tired. After being up for less than two hours and having two more episodes, he went back to sleep. Crappy thing is, drinking cold water and keeping the throat moist is a huge benefit to recovery.... Ian won't drink anything. Our favorite thing was the old goodie bulb suctioning........ very carefully. Ian would not swallow.

Hopefully, when it is all over, we will be ahead of where we were pre-surgery. Ian spent the day upstairs with us, a few toys, and some DVR-ed and taped videos. We spent the day in our pjs. He was having coughing and retching episodes on and off for the afternoon. While he was awake between naps we were able to syringe 20mLs of ice water through his mouth, and pushed four ounces of Pedialyte through the G Tube. We are trying to keep him super-extra-hydrated for healing. We even tried a few times to get him to chew on a wet washcloth.

Strangely enough, the child we had after dinner must have been a different kid. After his second two-plus hour nap and a bath, we noticed Ian having an episode triggered by bearing down. Ian's vagus nerve is so sensitive that bowel movements will set off retching. Since Ian hadn't pottied since Wednesday (day before surgery), we knew his body was trying to get back to normal post anesthesia...... or so we thought.

We gave him a little help with glycerin. Poor kid started squirming and whining like crazy. Once we had two good movements, he was a completely different kid.

Now, I certainly don't think that was the only problem, but it certainly made dealing with the other problems much easier for him. Vagus nerve irritation creates mucus... Which is already an issue post-op.... Plus, it hurts too much to swallow it. Inevitably, this lead to way overproduction of mucus, retching on it, and refusing to swallow...... Leading to more mucus and more retching.....

He never set foot downstairs all day and Tom and I only went down when we needed something. We had a family day upstairs. The second half was wayyyyyy better than the first half.



Sunday, October 21st

Ian was admitted back into the hospital for post-surgical complications. The coughing and retching and feeding intolerance was so severe. He was at a high risk of hemorrhaging the blood clots from the surgery. 

Re-admittance

The hydrocodone (Vicodin) caused severely delayed GI symptoms and needed medical intervention to be relieved. Radiographs show dilated intestinal loops from previous impaction. No perforation was seen. Ian's feedings were removed to rest his GI system during healing. He was on IV fluids for that time. He could have anything he wanted by mouth, within reason (no chips, etc.) He spent a large remainder of the recovery period inpatient where he could be monitored. His retching, feeding, hydration, and oxygen saturations needed monitoring.

Ian had Tylenol for pain as needed, with morphine as an escape backup. He had no pain medication since noon and was showing no signs of pain in addition to the ones when he was on the narcotics.



Monday, October 22nd

Ian had a rough night of with retching, suctioning, trying to potty, and with people in an out of the hospital room all night long.

We met with the doctor who decided to do a bowel cleanse to help clear anything that might have been getting in the way. The radiographs showed lots of air in the bowels. After the cleanse, Ian was able to work his way back up the feeding routine scale.

He was still having a hard time with the healing "scabs" in the back of the throat. They caused lots of retching. Nothing can desensitize that area for him. He continued getting Tylenol for the pain, which was minimal at this stage right now. The resting bowel and elimination of hydrocodone has helped him very much.

At this point, Ian was able to rotate with Tylenol and Motrin for pain. The next three to four days were very uncomfortable as the scabs are sloughing off. This is also the most susceptible time for bleeding....... so with Motrin, he was on close watch even more. Our family and our ENT decided Motrin was a better avenue than hydrocodone. Nothing is perfect.

The next few days we were there, waiting for everything to pass. Ian continued to crack a few smiles and high-five all the nurses and techs. He of course hated the IV and the bracelets, but who doesn't.

Mommy Snuggles
Daddy Snuggles


Tuesday, October 23rd

Overnight, Ian continued receiving the laxative to clean out his GI tract. It began at 2:30P yesterday afternoon. By night time, he was getting 100mLs per hour, continuously. At 2:30A...... well, you know what happened! After a thorough bed changing and cleanup, we noticed Ian’s IV bandage was soaked. Turns out, the IV had slipped out. So, at 3:15A.... down the hall we went to the treatment room (This is a place for procedures so kids’ rooms stay “safe rooms.” Why they don’t do this for adults is beyond me!) for a new IV. By the time we returned, Ian was so tired and back asleep quickly. Throughout the night, we were periodically changing diapers. Laxatives would continue until everything ran clear.

In the morning, it was still going. After about 18 hours, around 8A, they turned it off because things were completely cleared out. I cannot imagine being on laxatives for 18 hours straight! It must have been way off in there........ thank you hydrocodone. Around the time of the cutoff, Ian began having another retching episode. It turned out to be a bad one. As we were gently using the suction, we noticed blood. Ian was shedding a piece of a scab from the healing process, a normal occurrence....... the bleeding was not. It was only for a minute or so and was minor. No action was needed, but scared the crap out of us, and Ian.

That night, we had decided to try the Motrin-Tylenol alternating route instead of hydrocodone. Around day five or so, kids have the most post-op pain, because of the shedding. Once there was a bit of bleeding, Motrin was bumped for a bit (since it promotes bleeding). Thankfully, there was no more bleeding.

Overall, the day was an improvement. Ian hardly had any retching.... maybe six episodes or so, smaller ones. This is a large improvement over the 25+ on Sunday. We hardly needed to use the suction at all. The doctor decided we could begin to reintroduce feedings. We were even able to have Ian’s home pump cleared by the hospital so he could use his backpack and walk around.

We decided as a family that since Ian no longer needed IV fluids, and the remainder of our stay was hopefully limited to a few days...... that we would clamp off the IV and leave it in.... understanding that if we needed the IV again, and if it clotted, we may need a new one placed. With the IV clamped off and disconnected, and a backpack for feedings.... Ian was free to walk around without poles or attachments. He loved this.

He was back to his normal “social” self....... at least for a while. He was flirting and schmoozing the nursing staff. He enjoyed wagon rides and the playroom. He started back at half strength feedings, mixed with Pedialyte. 



Ian was getting ready to progress to full strength overnight; however, his schedule would be more continuous than before. He ran a four hours on and two hours off schedule until morning. Then, we began trying two hours on and four hours off. this was in hopes of trying a regular meal schedule of eight hours the next night.

He rested well that night and sounded clearer in his lungs and was managed pretty well with OTC Tylenol for the pain....... a major trooper for the expected level of pain during that stage of healing.



Wednesday, October 24th

Ian had another pretty good day. He was up early, but slept for over six hours in a row. He also only had two retching-coughing incidences in the last 24 hours.

He was initially struggling to get everything moving after the laxatives stopped. Sounds strange, but the cramping and discomfort, and being without food for 48 hours makes it even harder to resume normal.

Once the day was going, we were told to get Ian moving around the hospital. We ventured downstairs and wandered around the lobby. Ian instantly made friends with everyone. Such a cutie. They even have a little courtyard area that we were able to walk through. Ian sat on a little bench and stopped at each stepping stone, waiting for Nana to count them for him.

We were able to get back on his “normal” at-home feeding routine by the afternoon. That night was his first at-home routine overnight meal. He seemed to be tolerating the food well enough...... that is to say, the retching seemed to be focused on the throat recovery issues at this point. Before each coughing-mild retching episode, Ian had lots of thick mucus in his mouth. This forms from his lack of swallowing and spitting..... as well as the refusal to drink anything. Keeping the mouth and throat moist would help him tremendously...... But I digress.

After speaking with the doctor, she recommended a urine sample. Ian has always been “very difficult” to get a good blood pressure. They are usually high. He is unhappy when they take it, which doesn’t help...... but even when he is asleep, they are high. It has never caused concern before (to clinicians...... I have actually inquired the the RNs and techs a handful of times over the last year). She wanted to check for kidney functioning, since that is a key organ that can indicator a cause for high blood pressure. Collecting a urine sample for a two year old boy is quite the chore. She mentioned the best collection would be to leave him without a diaper on the bed and wait for him to pee and then catch it in the air....... begin laughing......... now........

Ok, are you done? Since this was NEVER going to work, we had to result to the urine bag. Placing a bag around a two year old’s penis while the outside is attached to his skin with a circle of strong adhesive is not what I call good medical technology. We did this once before at CHOP and Ian was no dummy. He held out for three and a half hours before he peed. This time, it only took about 10-15 minutes. Removing the bag is the worst part. Fortunately, our nurse was fantastic and did an excellent and practically painless job of removal.

They looked for proteins and other possibly elevated levels. They also did a four-point blood pressure check which includes taking four BPs one right after the other. Ian hated this. They were high for his age, but not terribly high seeing as though he was crying for some of the time and in a hospital setting. We will follow up with that procedure again at the pediatrician’s office.

Ian continues to enjoy his VECTA..... His super cool sensory machine with lights, colors, sounds, smells, and tactile toys. We call it his nuclear reactor. There are no other children his age on the floor that wanted to play with it.... so it has been in Ian’s room the whole time. Sometimes we left it on overnight since the white noise and colors were soothing for him. 

Ian's "Nuclear Reactor" changes colors and has bubbles and fish



He had fun in the playroom and took wagon rides around the floor. He especially has enjoyed watching his DVDs and pushing the buttons on the bed...... mostly the nurse call button..... sorry RNs! We even placed tape over the bathroom door latch since he has been playing with it. I can see him now...... pulling the lever door closed from the inside and pushing the lock button! No thanks! 

Ian can tell Ian missed his toys and bedroom, and all of his friends at preschool. He certainly had cabin fever and wanted fresh air badly.  Later in the afternoon, Ian was even able to slip outside into the courtyard and get some fresh air.

Having fun outside

That night, we were even able to get Ian to suck on a popsicle for a few minutes.  It has been 9-12 months since he has done that.

Mmmmmmmmm, orange!



Thursday, October 25th

Ian was able to come home Thursday afternoon. We found out the results of the urine test and all was normal. The doctor was also not concerned about the elevated blood pressures in the 4-point check. We will be following up with the pediatrician in the future about those. Thankfully, as it is now, there is no concern about Ian’s kidneys or cardiac issues with blood pressure. They were able to get one good reading while he was sleeping.

Ian was to the point where the worst phase of recovery is winding down. His throat was very sore as things continued to shed and sensitive scar tissue is exposed. He had very copious and thick saliva, which he will not swallow. As a dental hygienist, it made me cringe to see his mouth that way. Thanks to bulb suctioning (which I seem to only be permitted to do since I am a “professional suction-er” haha) and wiping with tissues..... we are still trying to stay ahead of the game. His throat is very fragile now and suctioning poses potential for trauma. Thankfully, I have years of suctioning experience, LOL. There is a lot of throat clearing and gagging-coughing on the mucus. I wish he would drink more liquids to keep his saliva thinner.

He is back to rotating Tylenol and Motrin....... but we watch him closely with motrin. He is much happier sleeping in his own bed. He smiled when he went to bed tonight and wanted to get right into his bed. He also thoroughly enjoyed a bath. The last bath was Sunday and he was beginning to smell like that week-old bandaid adhesive........ you hospital mommas......... you know the smell. It covers them! He did spend some time playing with his toys and watching Sprout, but he mostly wanted to love-on and wrestle a bit with daddy.

He gave lots of hugs and kisses today, feeling good, or bad. Hopefully he will rest well the next week or so and be fully recovered. We were planning to take him to preschool for an hour or so to see his friends and play a bit.



Friday, October 26th

Overall, Ian is had a better day today. While he awoke with the same coughing of icky and thick secretions which he refuses to spit or swallow, he has been happy. The time period did not last as long and was less severe. He seems to be making progress everyday.

After he did his coughing thing this morning, we got him ready for the day. He was extra tired since the Amoxicillin antibiotic is causing him abdominal cramping. He has been waking four time a night or so, holding his belly. He looks so sad. Since he had laxatives continuously for 18 hours to cleanse his impacted bowel, his body is already sensitive. That type of cleanse is usually not indicated for children of Ian’s age and weight. Impaction is uncommon in small children.

Ian seemed in good spirits, so we took a trip into preschool. He was sad and a little cranky about the trip, but had a great time once we were there playing. I slowly slipped out and returned two hours later. He had a great short school day for his first day back after surgery.

Ian’s ENT also called this morning. The pathology reports were positive for Staphylococcus aureus. This is a major component of Ian’s extremely inflamed and enlarged tonsils. This infection has most likely been there for months. Since they were extremely large in April....... I’m guessing six or more.

Ian is two days away from finishing the Amoxicillin. He will now be taking Omnicef (Cefdinir). Ian has a very difficult time with antibiotics. He has taken this successfully before without intense GI side effects. The ENT decided to try this route before trying a “new-to-Ian” antibiotic during this fragile time. He is hopeful that the tonsillectomy removed all of the infection. Tom and I have suspicions since the bronchiolitis incident a few weeks ago.

Viruses almost exclusively cause bronchiolitis and staph aureus is a bacterial infection. Staph aureus can also cause pneumonia (bacterial pneumonia). One was most likely a secondary infection to the other. With Ian, you never know. Regardless, they both seem to be on their way out. Ian’s only large troubles are when he wakes up, or about 20-30 minutes. As the days go on, that will hopefully dwindle as the healing continues. 




**************************************************************

This was Ian’s eighth hospital admission in 2012 alone. We figured out if you count the NICU “admission,” Ian has totaled twelve admissions and spent over 100 days inpatient in the approximately 680 days of his life. While I know many children who have spent considerably more time inpatient than that, it always seems like too much when it is your child. When you think of it as right around 15% of your life, it puts it into perspective. Especially since each inpatient day is supposedly not considered a day in development. In theory then, including the prematurity, Ian would be around 25 weeks behind in development. When you look form that perspective, he seems to be doing SUPER-DUPER developmentally, even though his “age” shows a delay in some skills.

It was hard for us to witness, as always...... but, it's worse when others judge your decisions. We try to keep quiet sometimes because someone always has an opinion to throw in...... bottom line...... IT SUCKS..... ALWAYS! There is never a good option and none of the choices make us feel happy. Almost all the choices include potential for pain, or problem worsening before improvement.

Tommy and I are tired, but cannot imagine what it must be like for Ian. We stick together as a family, have lots of snuggles, and try to keep our cool. We have discovered nothing gets done when you panic. Ian is where he needs to be and is in good hands. Right now, Ian is still in a painful stage of recovery. This is when the scabs are shedding and the new, sensitive scar tissue is being exposed.... no fun. Hopefully, each day will be progressing more and more.

We hope slowly getting Ian back into his fun activities will help him readjust after discharge. I always wonder if he thinks we are going back after we have come home. He seems to know the hospital setting instantly, but I hope he knows that coming home means being home. We never know if and when the next return will be........... but I hope he knows that home is a safe place where he can simply be a little boy who loves to play.

A special thank you again to everyone for tuning in, listening, and being there for support. Our little boy has people all over the world routing for him...... and we wouldn’t trade him for anything!!!

Sunday, October 14, 2012

Chasing Bubbles at Gymboree


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Having Fun at Gymboree and Swimming Lessons

Practicing my kicking and floating in the big-boy pool and playing with all the tiny bubbles at Gymboree.


Peek-A-Boo


Floatie Time

Time for Splishy-Splashy

Gymboree Bubble Time

Swimming with Daddy

Having Fun at Swimming Lessons


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Saturday, October 13, 2012

Sensory Processing Disorder from a TubieMomma Blogger

A good TubieMomma friend of mine keeps a running blog of her daughter and family. She is a little older than Ian and has more than a handful of the same issues. They both have been diagnosed with Sensory Processing Disorder (SPD). No matter how hard I try to explain this condition, the toughest critics never understand the foundation. She puts it perfectly! I haven't even heard Physical therapists and Occupational therapists explain it this well.

This information is used at the permission of the blogger and should not be reproduced without prior authorization. However, her blog is public and can be found at this domain:

A Girl and Her Tubie




In her words, Sensory Processing Disorder is (dad, this one's for you)~ Her discussion also includes weighted blankets. Weighted blankets and vests, along with compression vests are helpful to children with SPD...

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jumping, crashing into things, etc. decreases. In other words, it helps the child to calm down, relax, and become less defensive about things that bother him/her.


Friday, October 12, 2012

Dancing to Elmo

Before Ian's sleep study


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Cruising in the Firetruck

Having fun driving


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Doing Nebs during Virus

Treating viral induced asthma


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Dinosaur Cruising

Having fun with the Dinosaur


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All in a Week's Time


Polysomnography

I suppose Ian’s sleep study went as well as a sleep study could. He hated the “prepping,” of course and didn’t enjoy sitting for 15 minutes while everything was being set up. He looked like one of those electrostatic balls with all the beams of voltage sprawling out everywhere. There must have been 25 electrodes. That doesn’t sound like a lot, until you put them on a two year old.

The electrodes are attached with stickers on the skin, and conducting paste on the scalp. It reminds me of the paste we had a kids with the paddle applicator attached to the lid. It was sort of gritty and clumpy. He also had to wear 6 electrodes or so on his face, adhered by stickers. He really loved those!!! The ones on the skin seemed to be more of a nuisance than bothersome. When they were all in place, the technician wrapped a gauze bandage around his face and scalp to keep the electrodes covered. He looked like the cutest little mummy I had ever seen. The gauze even covered his ears and chin. Only his eyebrows to mouth were uncovered. The lady then took all the wires to the back of his neck and twisted them, much in the way an electrician ties all the wires together. Velcro kept them in place so they wouldn’t tangle him during the study. He also wore two small velcro belts around his chest and belly. These monitor movement from breathing.

Ian at the Sleep Study shortly after the small nosebleed

Once that was completed, it was time for bed. I knew Ian was going to have trouble calming down. I stayed next to him for a while until he fell asleep. It wasn’t too long. He was tired and had exerted himself a bit being upset from the prepping. Ian sounded snuffy shortly after falling asleep. I could hear the mucus moving around in his sinuses. I went over to check on him and found he had another bloody nose. He had been having a few the last couple of days. It seemed to be a combination of the tissue fragility from the oral steroids for the wheezing, the nebulizer usage to help him breathe, the cold windy air here on the east coast right now, and the sensitivity from the viral irritation. Thankfully, it was a small nose bleed that only was a minor disturbance for him. He fell asleep again quickly.

Once Ian was asleep, I knew the nasal cannula and sensor were coming to monitor mouth and nose breathing, CO2 emittance, and O2 levels. I had a bad feeling. Ian couldn’t keep his NG tubes in at two pounds. I knew the cannula would be a problem. It went in smoothly while he was sleeping, but needed reinsertion a couple times overnight. The report stated “Difficulty accepting cannula.” It comes out four times in eight hours in a two year old that is constantly rolling around with all that crap on and it’s “difficulty accepting?” Whatever ladies.

In the morning, Ian was just as unhappy taking it all off as he was putting it on. It was mostly fear. The paste and electrodes are not painful, but are uncomfortable when not knowing what to expect. Ian was tired of someone “messing” with him. We did need to take a shower right away. The clinic had one where we could wash Ian’s hair and remove most of the paste. He didn’t like that much either. Soon, we were on our way home and he was happy to return to his own bed, own tub, and his own toys. 

Ready to go home after the sleep study

We were able to have the report read shortly after the study. As expected, Ian performed poorly. It seems that a combination of issues are concurrently causing problems. I’ll lie out the details first.


Breathing Patterns
-Obstructive Apnea: 0.1/HR
-Central Apnea: 1.2/HR
-Mixed Apnea: 0.0/HR
(Total Apnea Index 1.3/HR)
-Hypopnea Index: 9/HR
(Total Apnea-Hypopnea Index 10.3/HR)

Obstructive Apnea is airflow impedance or diminishment during sleep because of physical obstruction of some kind. Central Apnea refers to the cessation of the breathing signals from the brain. Mixed Apnea refers to the combination of the two together. Some degree, while small, is considered within normal limits. Hypopnea refers to shallow breathing. There are reductions in airflow but no cessation of breathing.


Arousals/Awakenings
-Apnea and Hypopnea Related Arousals 7.9/HR
-Arousal Index 30.9/HR
-Arousal and Awakening Index 34.3/HR
-Spontaneous 11.1/HR
-Respiratory Event Associated 7.9/HR
-Periodic Leg Movement Associated 9.2/HR
-Total Awakenings during the study 26

Arousals are brief interruptions in sleep which occur from sleep related disorders, breathing changes, or can be spontaneous. Arousals bring you to a lighter stage of sleep. If the arousal lasts more than 15 seconds, it becomes an awakening. Ian’s arousal and awakening index was pretty high. The movement of his legs and hypopnea are greatly contributing to his ability to remain in a deeper, more restful sleep. The results show that Ian “woke up” 26 times in 7.6 hours.


Periodic Leg Movements
-Periodic Leg Movement Index (Sleep only) 16.3/HR
-Arousal Associated 9.2/HR
-Frequency of Periodic Leg Movements (Awake and Sleep) 28.3/HR
-Leg Movement with Arousal Index 15.3/HR

Ian was diagnosed with Periodic Limb Movement Disorder. This is very similar to Restless Leg Syndrome, but applies to sleep only. I noticed during the study that Ian was very restless and was moving his legs around a lot. They did seem to disturb him. It was interesting to see the correlation with apnea and hypopnea occurrences.


Oxygen and Carbon Dioxide
-Oxygen Levels between 90-98%
-Time under 92% 1.8 minutes, 0.4% of sleep time

Ideally, blood oxygen levels are above 92. Above 95 is considered excellent. I remember being in the NICU with Ian and watching the numbers drop into the 60s and 70s. The NICU alarms would beep at 82. it was great to see that Ian was keeping his oxygen levels up despite the hypopneas and apneas. Ian’s carbon dioxide levels did not accumulate. They are unsure if this is because of actual results, or because of his inability to keep the nasal cannula in for a specific period of time. Also, irritation from the cannula can create mouth breathing.


Sleep Stages
-Sleep Onset Latency (Time to fall asleep) 28 minutes was within normal limits
-REM sleep (dream sleep) Latency (onset) 215 minutes, normal 80-100 minutes
-Sleep Efficiency Decreased at 81.1%
-REM Sleep Total 13%
-Slow Wave Sleep (Stages 3 & 4) 9.1%
-Total time awake after falling asleep for the first time 75.5 minutes

Ian did not spend enough time dreaming in REM sleep. About 20% of sleep time should be dedicated to REM. The arousals and awakenings keep Ian from spending enough time in the REM stage. He also took longer to get to REM sleep... mostly because of the arousals and awakenings keeping him in early sleep stages. Ian only slept 81.1% as efficiently as he should be. He is not getting the rest he needs from sleep. Sleep stages run Stage 1, Stage 2, Stage 3, Stage 4, REM sleep. Stage 3 & 4 are considered slow wave, deep, sleep. As mentioned before, 20% of sleep is typically in REM sleep. Stage 2 sleep should include 50% of sleep. Stages 1, 3, & 4 encompass the remaining 30%. Ian spends 9.1% of his sleep in Stages 3 & 4, leaving over 20% for Stage 1, which is too much. Because of the arousals and awakenings, Ian spent too much time awake during the study.

The final conclusions stated that Ian has severe obstructive sleep apnea with sleep fragmentation. This mild-moderate-severe guideline is variable amongst clinicians. however, with the hypopnea included, Ian falls into the severe category. He was also diagnosed with periodic Limb Movement Disorder. We have yet to speak with anyone about this and I am curious to hear what they have to say, how this is correlated to the apnea and hypopnea results, and whether it is even something we need to be concern about.


Impacts on Functioning: Swallowing, Breathing, Speech

As we move on to how this affects Ian in others ways, many unforeseen correlations appear. I knew that the tonsils and adenoids would be causing swallowing trouble. We found out at the ENT a few weeks ago that they would be causing sleeping problems, as well as significant breathing problems. Recently, I discovered through a support group that many small children with severely enlarged tonsils and adenoids have speech delays. Without the resonance and oral-nasal ability to make certain sounds, speech is unable to develop the way it should. I realize this does not happen in all children.... but if there is a small chance, it probably effects Ian in some way. I imagine Ian’s entire oral-nasal-esophageal region has been held back by a combination of things, including ENT troubles.

Yesterday at Physical therapy, I mentioned the sleep study. I like every provider to know what is going on, even if it is not related to their specialty........... because it always ends up impacting Ian somehow. This was no exception. The PT and I had been discussing Ian’s issues with proprioception and spatial awareness, as it pertains to his body (more on that in a minute). As it turns out, Ian’s difficulty with knowing where his body is in space and how it relates to things around him, is exemplified by his disrupted sleeping patterns. When Ian does not rest well, his body is unable to calm itself during the day. He becomes accustomed to always being on the go and being at a “heightened” level of activity. Therefore, he seeks this during the day. He looks for stimuli and feedback that give him strong responses.

The PT explained it very well when she asked “Have you ever just been so tired that you couldn’t calm yourself down or relax?” On many occasions, I have been so tired that I couldn’t stop laughing, or even running around cleaning things. It is the same with kids. Even babies get “overtired” and then cannot calm down to fall asleep. This is the same type of response for Ian. She explained that as his sleep improves, we will most likely see an improvement in his sensory input/output.




Physical Therapy/ Occupational Therapy Details- Sensory
(Sleep, muscle movements, senses, pain, weighted vest, and SMOs)

We are very blessed to have an awesome Physical therapist would has a lot of experience in Occupational therapy as well. You may be asking why a PT would be treating Ian for these issues. The reason is that his shoulder girdle is weak. His muscles are not strong enough to keep his scapulas moving in the right direction. For example, Ian has troubles pulling things and holding himself up. If we place Ian on his belly and lift his legs, he will not hold himself up with his arms.

A good bit of this trouble is associated with Ian never crawling. However, I need to add that not all “non-crawlers” have these problems. Ian has a secondary issue contributing, the proprioception/spatial awareness issue. Also, his abdominal muscles are weak because of gastric surgeries. Another category we focus on is vestibular awareness (head). Having Ian lying down with movement, or hanging upside down helps him understand where his body is.

Some might say that these things are no big deal, and they will work themselves out on their own. Well, that’s great........ if they aren’t causing issues that are impacting other areas of life. Ian is struggling with muscle group usage and even sleep troubles because of it. This isn’t something to be ignored. The PT was explaining how kids like Ian have little perception of pain.

This is something we always knew was there. Ian has a very very high pain tolerance. While some of this is an internal “battle wound” from all of his medical aches and pains, some of it centers around his sensory issues. Ian often falls and cracks his head on things, cries for a minute or so, and then runs away. Case in point...... yesterday, Ian fell at PT and cut his forehead. There was very little blood. He ran over to get a kiss from mommy while he was crying, pouted for a few seconds, and then went racing down the hall to play on the balance beam....... meanwhile, I large goose-egg develops on his forehead. This was of no concern to Ian. He takes lots of falls and never seems bothered.

While many may think this to be normal, this next one seeks to prove otherwise. Ian is now in a head-butting phase. it doesn’t matter if it is people’s legs, couches, toys, or walls and chairs, Ian seeks strong feedback from banging his head. This is not good. Not horrible, but something to work on.

With Ian experiencing such high levels of pain at such a young age, there is concern about his perception of pain in the future. He may already be doing it now. With his sense and thoughts of pain developing, he isn’t learning an accurate sense of pain. What we find painful, Ian may blow of later in life. It is important for us to remind him what shouldn’t feel right. We once told a feeding therapist that it would be great when Ian is older and can tell us when his belly doesn’t feel good, or if his bowels are hurting him. She responded with “He may, but he may not.” She explained that what he is feeling has become “normal” to him and may not be described as painful down the road, because it is what he has always felt. If you have nothing to compare it to, you don’t know that it doesn’t feel right.

Ian is a child who is constantly exhibiting a large amount of energy and activity. While everyone says “That’s how little kids are,” and “Well, he’s two,” and “He’s just being a boy,” Ian is above and beyond that category a lot of the time. Sometimes he is very low key and the average active child. Unfortunately, a lot of the time, Ian is what they call a “hurricane kid.” With his body seeking constant stimuli, he isn’t always aware of what is around him, or what might be consider dangerous. As a result, he misinterprets things both ways. He will steer clear of things he thinks are harmful (gooey, cold, sticky things) and will ignore, or not realize things that are dangerous (running down stairs, climbing on unstable items, seeking excessive touch stimuli such as pain from a head-butt to mommy’s leg).

When Ian runs, he puffs out his chest, swings his arms rapidly, and lifts his head up to the ceiling. It is actually very adorable. But, finding out why he does this wasn’t so adorable. We are in the process of working with a weighted vest. These vest, or suits of amor as I call them, are designed to apply additional pressure and weight. The theory is that by exaggerating the sense for him, instead of having him seek it out, helps to make him aware of how his body should be while doing “normal” activities. Ian performs very well with the vest. The minute it is removed, he goes right back to the behavior. We are in the early stages of using this as part of his therapy. 

Example of a weighted vest

Ian sporting his awesome "armor" at PT-OT
Overall, Ian exhibits a lot of behaviors that purposefully seek high feedback. We are fortunate that they are limited to touch and taste at this point. He does not seem to have any visual, auditory, or olfactory sensory issues. 

On a separate PT note, Ian will be fitted for SMOs. The “supra-malleolar orthosis” is designed to correct loose, floppy, flat feet. Ian smacks his feet a lot when he runs and stomps for strong feedback. His feet are very flat from the hypotonia (low tone). The SMOs will help him create an arch in his foot and allow him to position them properly when he walks. Right now, Ian is rolling in onto the side of his foot because the arch in not strong enough to support the underside of his foot and hold it up. This position is called pronating. The SMO will fit inside of his shoe and comes up just below the ankle bone.







Ian never leaves a boring moments in our lives. We continue to move forward with whatever he hands us. He still smiles and has tons of fun, no matter what happens. he always ends up making friends with the doctors and nurses.

Preschool is going well. Picture day was today and it took a lot of convincing to get him to smile. Thanks to the Gymboree cheer “Hiiiiiiiiiiiiiiiip-Hooray” while we bang on our legs and then throw our hands up in the air, he finally threw out a smile. The virus seems to be moving on out, and not too soon. Today was the first day he didn’t have an enormous coughing fit when he woke up. We take it slow in the mornings and I let him call the shots on when he feels ready to do things.

The new food routine is working out wonderfully so far. It has been a few weeks since we started. With the exception of the virus-cold scenario, things have been running smoothly. The retching has ceased at this point and we are praying every minute of every day that it will stay that way. Ian is always changing things on us, so we never now what is coming down the pike next! 

Ian has picked out his own Halloween costume this year and has decided to be an Angry Bird.  it didn't take long for him to repeatedly pull that one off the shelf.  We are going to put store bags inside to poof him up a little, but here is a preview.

A "Not-So-Angry" Angry Bird

This is the cutest Angry Bird I have ever seen!

I know this was a long post, but it has lots of information included about so many issues, which all seem to be interrelated. As always, thank you for all the support and love. Please contact me anytime if you have questions or if you think your child may be experiencing the same trials. I’m always here to help! I have listed resources at the end of this post, but will also be including them in my PAGES that include resources.

Sleep Study Report:

Sleep Resources:

Pathology:



A Feeing Therapy Session

A small part of Ian's feeding therapy yesterday...... A so-so day.

http://m.youtube.com/watch?v=rPyWFW-OBOw



- Posted using BlogPress from my iPhone

Friday, October 5, 2012

45 Minutes Leads to Ambulance Ride

Ian Post-ER Update

Last night, Ian’s attack lasted 45 minutes. It did not respond to the Nebs and he was looking lethargic and floppy. He was turning shades of red and purple and was clearly not coming out of it on his own. The 911 dispatcher was wonderful and stayed on the phone while we did Nebs with Ian. The paramedics said that this is NOT the first kid today they have seen like Ian. The asthma and virus combo seems to be very high in our area right now.

Sorry this took so long to get posted..... it was another tiring day. We arrived home early this morning from the ER. The doctors took chest radiographs and found no pneumonia. However, they did find Bronchiolitis and mucus in the lungs from the severe inflammation. I have heard pneumonia can take days to show up on a radiograph, so, technically, we can’t be for sure...... especially since Ian is already being treated with steroids and Nebs.

The clinicians seemed to think it look very much like RSV. The test came back negative, thankfully. The final conclusion was that Ian has an unknown virus he contracted while recovering from his common cold about a week ago or so. Since he is already taking the Orapred and Nebs, there was nothing else that could be done. They did give him a Neb treatment in the ER before discharge.

Our follow up instructions were to continue what we were doing already. According to the ENT, pediatrician, and ER clinicians, the tonsils seem to be playing a huge role. Between the cold, virus, dysphagia, severely inflamed tonsils which are way too oversized to begin with, and an heightened vagal response, and reactive airway disease-asthma, it is no surprise why Ian is responding the way he is now.

We had a pediatrician appointment scheduled as a follow-up to the initial appointment already. We did need to see a doctor at the practice Ian has never met. Thankfully, there wasn’t much to do. I wasn’t overly impressed, but the job got done. The steroids are working as quickly as they “should” be, but they are helping. Ian has not been coughing today, only the attacks. He did have 5 attacks today, counting the 2 overnight that sent us to the ER. He had three after arriving home. They are fairly severe, but the Nebs help a little more, and they are getting to be fewer.

Ian is comfy in his awesome ComfyLift bed. I would highly recommend these for any child with airway and/or reflux/GI issues at night. Thank to Sheila, we have one.... and are in the process of trying to bill the insurance and medicaid for another. Medicine port and pull out disasters are rare, but do happen and wreck havoc on a foam mattress over the years...... Ian is not helping!

The worst part is that, like RSV, there isn’t much to do except ride out the virus. No antibiotics can help because it is not bacterial. We do have an Ammox Rx if we find no relief comes and we may need a sinus script med.

Tom and I got a little sleep this morning and this afternoon. Ian had some attacks while he was sleeping after arriving home..... but nothing that lead us to the hospital. He had a great afternoon and was playing. Ironically, last night, the last hour we were there, Ian was running around laughing and hugging nurses, playing. We pretty much had the pediatric ER to ourselves and we recognized lots of nurses from previous visits. We played catch-up and Ian schmoozed all the ladies. This is truly THE HAPPIEST SICK KID I KNOW. He can go from 0-100 in a matter of an hour or so at times. You gotta love this kid!!!

Thursday, October 4, 2012

Attacks Follow-Up

Ian has had two more episodes since the three this morning like the one I posted. Before they happened, we saw the pediatrician. He watched the video, examined Ian, and looked at his pulse oxygen levels. Ian’s pulse-ox was between 88-90. He did peak at 93. They did an in-office neb albuterol treatment to help him. It brought him to 94-95.

The verdict is that he has some type of unidentified virus, most likely pneumonia or croup, which he developed from a compromised immune system from the previous cold.... on top of the fact that he is immunocompromised anyway. He also had a severe asthma attack that was most likely exacerbated by the viral symptoms. He was wheezing even after the neb treatment. Ian has had Reactive Airway Disease (RAD) in the works on his paper chart for quite some time. It has now officially been termed asthma, but is billed as RAD so that no one “freaks out” as they do on the billing/ payment end with asthma.

Ian was prescribed oral steroids since the inhaled ones are not helping enough. I am aware of the fluid retention and behavioral side effects. Thankfully, he only needs a few days of the treatment and should not have any lasting effects. We will be ceasing the Flovent, Flonase, and Singulair for this time period because the Prednisone trumps all of that. He gets the steroid “because” the others are not doing what they need for him. While on this treatment, future attacks like he had need to be treatment with the neb albuterol, so we have a script for that. The albuterol inhaler isn’t doing as much as it should. As it turns out, the Prednisone increases albuterol receptors on cells in the lungs, allowing the drug to work more efficiently when used together.

In the future, Ian’s asthma should be moderate, and manageable. When he gets sick, it may end up being severe attacks with these new treatments being necessary to help him breath. We knew as a family that asthma was coming down the pike. The age of two seems to be the magic age, and here we are.

We are still visiting the ENT this afternoon as a follow up with him on this new dilemma. We will also follow up with the pediatrician tomorrow afternoon before the weekend begins to make sure things are going well.

I scheduled Ian’s sleep study for the obstructive apnea for Sunday night of next week. We should know shortly after that, how proceedings will go for the tonsil and adenoid removal.

Thank you to everyone for all the thoughts, knowledge, advice, and prayers and hugs. I come to all of you (friends, family, support group mommies and daddies) first. Other families like ours chiming in is like having all mommy and daddy heads put together. It helps us tremendously when we arrive at appointments, and in making decisions. We love all of you and are overwhelmed by your outpouring of love.

Ian's severe episode: HELP!

Warning: this is a severe episode for Ian, the third in a row this morning within the hour. Does this look like severe asthma to anyone else???

YouTube Video

- Posted using BlogPress from my iPhone


- Posted using BlogPress from my iPhone

Monday, October 1, 2012

New Schedules, Tonsillectomy, and Obstructive Apnea

Nine days ago we tweaked Ian’s feeding routine to try and minimize the retching. Before, Ian had four G tube meals at 9A, 12P, 3P, and 6P during the daytime hours. While he is still keeping the same number of meals, we have changed the timing and intervals for certain days.

We changed Ian’s 9A and 3P meals from one hour to 90 minutes. Tom and I noticed that Ian’s meals after waking were the most problematic. Although, how long after waking wasn’t as much of an issue as it was the volume after waking. Since it seemed to be a combination of a few things, we decided to try something new. Switching the lengths did seem to help, so far. Another change that we made was watching his activities around the meals. We made sure that Ian had ample time between meals.

We had to shift meals around some of his scheduled activities to do so. While arranging the changes, we noticed Ian is a very busy little boy. Mondays stayed fairly simple, but Tuesdays involved occupational therapy, Wednesdays and Fridays included preschool, Thursdays incorporated physical therapy and feeding therapy, Sundays brought challenges with Gymboree and swimming lessons. We finally found a routine that seems to be helping. This will be the first Sunday that involves swimming lessons and Gymboree class. Hopefully we can keep the good streak running.

Another thing that seems to hold great importance is when Ian lies down and/or is jostled after eating. For 10 minutes or such after finishing a meal (or the last 10 minutes or so of a meal) Ian needs to be upright and doing whatever he wants to do, within reason. Lying him down for a diaper change, or even to remove his belt and feeding extension seems to slosh around the food, or disrupts the emptying, or changes some perception of gastric fullness. While we don’t know exactly what the deciding factor is, removing a few seems to do the trick. This can be tricky with car seat time, nap time, and diaper changes. However, as most moms of these kinds of children will tell you, it ends up being very simple. I’m not sure why, but it becomes second nature and “normal” to do these types of things. It becomes your new normal.

I will mention that it is very hard to express the importance of “your new normal” to others. Throughout the months of rearranging and routine changes, we have hit resistance. Tom and I feel that the importance of advocating for your child’s needs and routines is a must. Children are not able to make the same adjustments as most of us are. While some children are able to be more flexible and adapt better to routine changes, these types of kids do not. Ian thrives on a routine and while the timing may be changing from day to day, he knows when something is coming and has a way of cycling through his needs in a day in the same order.

As time moves forward, we await each day with anticipation of the day’s events.

Today’s visit to the ENT begins a new journey. In the midst of Ian’s seasonal allergies, we decided to mention a few extra things at the appointment today. The appointment was a consultation for tonsillectomy. The surgeon at CHOP mentioned the time had come for their escape since they are impeding air passage and breathing. 



The otolaryngologist said Ian’s tonsils are actually larger than last time he saw them in April (after the ear tubes were placed). Since they were “too big” then, they are certainly causing troubles now. His other concern is Ian’s adenoids. We have an appointment scheduled in the next few weeks to have a peak at them. He will use a fiberoptic scope through the nose to view the adenoids. They are “tonsils” that are in the back of the nasal cavity. He is anticipating their enlargement as well.

In the meantime, we are to schedule a sleep study. The reason for the study is to examine the degree of severity of the obstruction. Since the surgical treatment and post surgical treatment depend on the exact severity of Ian’s case, a diagnostic evaluation is needed. The test will be looking for obstructive apnea. he is not expecting Ian’s test to be normal. He is fairly certain that Ian will show some abnormal results and give good information on what needs to be done.

We will call to schedule Ian’s sleep study in the next few days. I am hoping we will not need to wait weeks for the study, but knowing the ay these things work, it might be some time before we can get him in. Three weeks after the study, the ENT will receive a report. At the follow-up appointment to discuss the report, we will be able to move forward with the surgery. Tom and I are hoping that the surgery can be before the Christmas holidays. I think before Thanksgiving is a crap-shoot at this point.

As we move forward with another adventure for our little Beaner, more hope floats our way. It is a hopeful, yet very, very sad feeling when you are anxious to take your child to the doctor in hopes of making progress by talking about surgeries, studies, and procedures. However, I must mention that it is a way better feeling than the feeling of knowing you are going to a visit that you know will do nothing whatsoever........ which we have done numerous times.

We all have ailments over the years and feel hope when finding answers and moving forward with treatment. In our experience, it is a very different scenarios when it comes to your child, especially your small child. The feeling of gladly taking your child to multiple doctor’s visits and specialists every month is something no parent, or family should ever have to feel. But for those of us who do, the glimpse of hope keeps you trudging on. While some of us don’t get excited until something actually proves it is hopeful and working, the feelings generated at these appointments keep you going from one to the other.

There is a fine line between feeling hopeless and “knowing everything will be ok in the end.” Floating somewhere in the middle, these appointments intersperse optimism into the life of living from POINT A to POINT B.

Spiders and Dead Pumps and Shingles, oh and Vacation!

This past weekend we were all able to get away with family to the beach. As the four day weekend approached, Tom and I got excited about having four days away, to...... anywhere! Unfortunately, it would not come without jumping a few large, disgusting, and frustrating hurdles first!

As the vacation-eve came to an end, I made one last trip to the garage freezer, in hopes of snagging a Klondike Bar before bed. When I opened the garage door, a large furry, eight-legged creature greeted me. I promptly freaked out and shut the door. As I called Tom to execute our furry friend I made sure to let him know the caliber of his opponent. The body was larger than a grape and the legs spanned about four inches or more. Now, living in Northern Virginia, this is NOT an everyday “animal” of the habitat.

As Tom entered the garage he said “I don’t see anything.” This disturbed me as much as finding him chillin’ out in my garage. Hell no, this thing was not going to live in MY garage. As a good hubby does, he scanned the garage and found him hangin’ out under the car. I grabbed the largest fly swatter I had that happens to be a flip-flop on a long stick....... yea, that’s right, you heard me. After a few estimated approaches, Tom put the spider out of “our misery.” After the swat, I heard lots of cursing and smacking/stopping. I knew what was happening, although I tried not to think of it. An old friend recently has executed two in her home which immediately spurted hundreds of........ can you guess........... yea, baby spiders!!!

Asking the dreaded question “What’s wrong,” Tom replies with “It was pregnant.” I could feel the vomit rising in my throat. I ran to get the Raid as he continued practicing Riverdance on the baby spiders. As it turns out “Flying Insect Raid” works perfectly fine on creepy-crawlies as well. As the Raid wafted into the house, I had to shut the door. When the executions ceased, we needed to back the car out, hose down the garage, and allow to fumes to air out for a bit. Tom and I both enjoyed Klondike Bars before bed to “celebrate” our efforts. The phrase “What would you do for a Klondike bar” might never sound the same again.

As time would lead on, we had another speed-bump to disrupt our routine laden lives. Tom had some trouble getting Ian’s food bag to run properly in the feeding pump the same night as the creepy-crawlies. After replacing the bag, the pump seemed to be running just fine. Overnight, audibly, the pump was perfect. The volume was increasing as the food delivered and no alarms or errors ever occurred. At 5:30A when Tom unhooked Ian from his overnight meal, he took the bag downstairs as he always does. When he placed it in the fridge, he noticed that the bag was FULL. Ian had nothing to eat overnight, nothing. Now, when this comes to a two year old with ketotic hypoglycemia, (an abbreviated fasting time from g tube feeding routines) this is a problem. When we took his blood glucose, he was safe! The reading was 83 and we said a little prayer of thanks. Typically, Ian’s number would be in the low 40s at this point....... leading to medical intervention and a possible ambulance.

We had noticed that the pump was not running as it should be even after cleaning and resetting. At 6A I called the emergency phone line for our home infusion pharmacy.... I was quickly put on hold....... HOLD......... on an emergency line. Once speaking to someone, a nurse called me back telling me she would “Pass along the message to the Pharmacist.” This does me no good at this point. Ian needs food now and I have very little leeway to give him bolus feedings through a syringe or gravity meals. Thankfully, a Pharmacist called me right back and had a driver bring a pump within the hour.

Later on in the morning, they called again and brought a back-up pump for us. This has happened twice in the last year. The insurance and home care company had decided we were permitted to have a back-up pump for future emergencies. This is incredibly rare! It wasn’t four hours after the resolve of this incident for another to come along.

As I was packing and getting ready for vacation, my husband informs me that his mother has Shingles! This is a huge problem since Ian is only half way through his Varicella vaccines. He has neither immunity from vaccination, nor from exposure to the virus. Contact and respiratory particles become a major concern, especially with Ian’s compromised immune system. It looked as though we were going to be missing a very important part of our family vacation! Our trip to the Baltimore Aquarium that day was cancelled and we made plans to spend the night with friends, as to avoid contact with Ian and the virus.

Later in the evening, good news arrived. My mother in law had visited the urgent care from anti-viral medication complications. Upon her visit, she was told by two doctors, independently from the other, that this was NOT Shingles. The Physician’s Assistant had misdiagnosed that morning at the doctor’s office.

The next morning, a much needed vacation began as we travel to the eastern shore of Maryland. Driving as the sun came up over the flat fields of corn and soybeans was so beautiful. Tom and I went to college there and it brought back many memories of the drives, and the days which didn’t seem that long ago.

Once we arrived at the beach, we were able to do lots of fun things together like miniature golf, walking on the boardwalk playing in the sand, picking crabs, and enjoying some relaxation time. Ian had lots of fun in the sand...... which was wonderfully surprising with his sensory impairments. He was very excited to play with Grandpa and chase him around in the sand...... mommy, not so much. There is always fun and games with Grandpa. 



Ian especially enjoyed playing with the miniature golf props. He liked the dinosaurs the best!