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.

SURPRISE!!!! Caleb has an Unstable Airway

 Sunday, June 15th.... Happy Fathers Day!!

We started our day with a yummy breakfast outside on the deck together as a family praising God for the wonderful father Tom is and for all the blessings we have because he is such a hard worker and provider for our family.  Then we were off to church and a relaxing afternoon before we headed off to Pittsburgh for Caleb's hernia repair and dental surgery in the morning.

We decided to head to Pittsburgh for an overnight stay to save us from having to leave our house at 3 am like we did a few months back for Isaac's last outpatient surgery.  After that trip I realized I'm getting to old to go off of four hours sleep and still be required to function.  I was so exhausted it took me a day or two to recover.  To avoid this again we went and stayed with Tom's little brother Bill and sister in law Dulcie.  It was nice to sit and visit and see their apartment for the first time before they move into their new home they just purchased.

Monday, June 16th

Caleb decided to wake up at 4:30 am and "STOMP" up and down the steps to practice his stairway skills.  We do not have stairs in our house and Caleb thought this was a great time to get better at going up and down them himself.    

We left at 6 am and arrived just before our scheduled 6:30 am check in.  I was rather impressed that Caleb was signing doctor and giggling with no anxiety on the way into the hospital.  Maybe this whole doctor thing is getting better??!!  Welllll, then they put the ID bracelet on his wrist and the story changed.... he was mad!!

As per my request with the same day surgery scheduler prior to surgery we were escorted to a fun underwater room with the sensory bubble light brightly displayed.  Caleb loved it!!!!  I found out about this when Isaac was in last time.

It made me dizzy...LOL

As we were talking with the four different doctors who would be tending to Caleb's procedure (General Surgeon, Anesthesiologist, Pain Management, & Dentist)  he was enjoying some much needed bonding and playtime with his big sister Tristin.  He LOVES to play with her hair and run his fingers through it and make a mustache on his face with it.

The versed came and Caleb was happy in no time, so off to operation room he and daddy went.... 

*** NOTE: Daddy would NOT allow me to take photo of him in scrubs,,, party pooper *** 

Once he was fully asleep Tom met Tristin and I in the surgical waiting room.  We were told it would take about two hours so at that time we went ahead and got some breakfast and began eating it.   Tristin realized she did not put enough brown sugar in her oatmeal and asked Tom to come back to cafeteria with her to get some more.  I was sitting alone enjoying my coffee when the General Surgeon and the Anesthesiologist approached me and asked me to come into the consultation room with them.  At first I wasn't to alarmed but then I realized that we were no where near the forecasted two hours of wait time.

They started by saying he is doing wonderfully and he was sleeping.  Then they said that they unfortunately had to cancel the surgery.  I then grew very alarmed and wondered why in the world it would have had to be cancelled.  The Anesthesiologist went on to say that he knew he was going to have to use a smaller breathing tube for him due to his subglottic stenosis and he started with a small tube.  That one would not pass, he went to the next smaller tube, that one would not pass, down to the next size and it would not pass.  At that time he consulted with and ENT to come and scope Calebs airway and found that his subglottic stenosis has progress to a Stage 2 level.  There seems to be some scar tissue that is building up and causing more of a narrowing than he had before.  This is most likely caused from having breathing tubes inserted as a NICU baby and from the many surgeries over the years.   The General Surgeon, ENT and Anesthesiologist all agreed that the case must be cancelled due to an unstable airway.  My heart sank.

My husband then came back from the cafeteria and the doctors so graciously told the whole story over again to him.

The Anesthesiologist said he is so surprised that Caleb does not present with any symptoms such as Stridor and Croup, because he should probably have those symptoms daily.  He certainly does have Stridor and Croup when he is getting sick, but not on a daily basis.  

One of the most memorable comments a doctor ever made to us was when the boys were 11 months old, they had just both had their first scope of their airway done due to constant Stridor and Croup.  It was diagnosed at that point that they both have Subglottic Stenosis.  Dr. Bluestone told us that he cannot even understand how either boy is breathing without a tracheotomy yet their oxygen levels were fine.  That was a very scary statement and one I will never forget.   Now I hear almost the same kind of scary news 7 years later.

After the surgical team consulted with the breathing clinic and a new ENT we are going to see it was decided that since the boys are identical and because Isaac is actually the "more ill" of the twins, they want to evaluate them both next week.  I was totally thankful and impressed that they would suggest that and carry it through with an double appointment next week.  Apparently this clinic is a VERY BUSY one.

Please continue to lift the boys in prayer.  I am trying to not let this freak me out, but...... it's freaking me out!  My prayer is that the Lord give us the strength and understanding we all need to help the boys and bring their airways back to a healthy size to avoid this scare with future surgeries.

For those of you reading this far and unfamiliar with our beautiful family, our boys Caleb and Isaac are 8 year old  identical twins both with Down Syndrome, PDD Autism, ADHD and a list of medical issues.  They keep us busy, they scare the bejeepers out of us sometimes with the unknown, they bring us joy and sorrow and yet we feel doubly blessed in good times and bad.

Please comment if you have been through this ordeal with some words of encouragement and wisdom.

By the way, Subglottic Stenosis is what qualified each of my boys for their wish from Make A Wish.  

Update on Tonsil Removal

11 days post op and I would say, twins are back to normal.  As a matter of fact, no pain medicine was given today at all.  They are still eating softer foods, cookies, hot dogs, ice cream, apple slices.  But I really think they are safe to get back into their favorite crunchy foods.

My take on if the Risk was Higher than Reward:  It was a long recovery with an ER trip for IV fluids on day 7, but overall, seriously the recovery was way better than I was expecting reading over blogs of other's experiences.  Anxious to see if this in ANY WAY affects their speech.  There is a tiny part of me holding onto some hope that they may just start making some more sounds now that they don't have obstructive tonsils making it difficult for them.

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.

31 for 21: A mom's job is never done

My days lately have been beyond full and busy..  I would love that have someone smack me upside the head and ask me what was I thinking tearing up the kids bathroom to completely... "completely" remodel it.  Everything but the plumbing is being replaced and renewed.  I started more than two weeks ago and today my guess is that I still have about a week or so to go to finish everything up.  Its not that there is that much work left, its that my daily schedule is so busy that it leaves me no time to work on the bathroom.

I seriously have a 13 year old threatening to move out if I do not get her bathroom back in order.  WOW imagine only having one bathroom for the whole family LIKE I DID GROWING UP :) 

Today I made progress.  Ceiling cleaned and then painted.  All the walls primered and wall paper hung on more than half of the walls.  I feel good about today but nervous that my next job will be tearing up the floor and laying down another one myself.  I smile at myself often thinking that its good sometimes to have spunk like I tend to have.  If I want something done, I getter done!!

This also pertains to being a mom to 2 children with special needs and 3 others with typical everyday needs.  I don't know how I get everything done that I do.  I could absolutely use a clone of myself to try to double my output, but everyone is happy, healthy, and getting all of their basic needs met.  We do not do extra things like go out to eat often, goto the movies, or for that matter even hit the mall very much.  With a teenager and a 9 year old girly girl... that is not met with alot of complaining.

My Down Syndrome Awareness tip of the day is this:  "Raising a child with special needs does take more time and often requires more doctors visits, therapies, and schooling, but I know that taking the time with them now will only provide us all with a brighter future.  They are learning independence, social skills, and they are learning that I will offer them everything I have as long as they are happy and gaining new skills.  As far as my other children.  I pray that they know that they are worth just as much time and effort, but since I don't have any extra minutes in my day, what I do give them is from the heart each and every minute."

I LOVE MY FAMILY :)

31 for 21: Sleep Study Day

Today is a day that we have been waiting, and waiting, and waiting for.  Back in May we saw a new ENT, Dr. Dohar, at Childrens Hospital in Pittsburgh.  He was a very nice doctor who really seemed to know his stuff.  We were referred to him by the Down Syndrome Clinic at Children's.  They said that he has been treating alot of their Down Syndrome population and we should switch over to him.  He decided to have the boys do a sleep study to determine if they suffer from sleep apnea at all due to the very large size of their tonsils.  One a good day with no infections or colds the boys tonsils almost touch, they are huge.  I thought that alone would be criteria to remove them, but apparently not.  We had a sleep study scheduled at the beginning of July, but Caleb broke his femur on June 24th and was totally not sleeping through the night at all, so we canceled both boys.  I figured I didn't want one done without the other and risk the chance of having two separate surgery days if they do in fact need to come out.  So we held off until the cast came off and here we are.

I have never experienced this before and I am a little nervous based on the stories and photos I've seen of other children having this done.  Just all the wires and tape and discomfort.. doesn't look fun.  But I am anxious to see the results and think its a needed study.  Tom will be in one room with one boy and I in another with the other boy.  We check in at 6:30pm, get hooked up, calm them down, lights out by 9:50...hopefully sleep.. study done at 5:30 am, remove wires, check out at 6:30 am.  GEESH, sounds like a good time to me!!  Part of me is smiling because I have been telling my husband for months that he should in fact get a sleep study done as much as he snores and chokes up while he's sleeping sometimes.  Maybe I can persuade the sleep study tech to suggest it to him after tonight too :)

The chore that is cut out for me today is to keep them awake during the 2 1/2 hour car ride to Pittsburgh, we are to try to keep them from napping at all today.  Good thing for portable DVD players, they are totally a life saver most days with us.  I will sit in the back seat and engage them in the movie and act silly the whole way, so if your driving by and see a crazy woman doing tricks in the backseat today in route to Pittsburgh, honk and wish me luck...

I will update with photos later if I can. 

On a side note, I am sitting on the bedside next to the bathroom typing this up while the boys are getting their bath listening to the most joyous sound in the world.... the belly giggles of two brothers playing in the water together.  Thank you Lord for today and whatever it may bring!!!

No tears... Cracked Lips... Yep, We're Dehydrated!!

So my previous post was calling out for advice on how to get more liquids into a kid that will drink NO OTHER liquids but rice milk. And when his tummy was sick, even rice milk was not going in.

We ended up in the hospital on Thursday morning. No tears, no saliva and lost 1/2 a pound in one day.. My poor bugger was so sick. His little bottom was so sore from constantly going to the bathroom. I knew immediately when he messed his diaper again because he would scream from pain. Its always so heart wrenching when your child is sick.

He has been in for two days now and I am expected discharge today.  He's got his spunk back, he's eating and drinking and quite frankly I AM TIRED OF WATCHING BLUE'S CLUES!!!   There are about 10 channels on the tv here with PBS being the most kid friendly channel, so we have been watching Blue's Clues videos non-stop for three days...UGH   A mama can only take so much of this stuff when I'm confined the the same room and have no other choice to to watch this over, and over and over and over... At least at home I can go about my business and clean or watch a different TV..  I'm just glad that Caleb is content to sit and  watch something repeatedly and still have a gigantic smile on his face with each show.  That is mostly what I watch and enjoy!!

I am looking forward to seeing the other kids today.  This was one of our shortest hospital stays on record but its during tax season when daddy has to work extra long hours and now mommy is away at the hospital with Caleb, we had four kids staying at three different houses.  (Thanks Aunt Cathy, Aunt Megan, Grandma, and no today Nana!!)

As always, its been a learning experience for me.  I got to sit and talk with a dietitian yesterday about his lack of desire to drink ANYTHING but rice milk.  She said that everything I am doing as far as "trying" to introduce different things on occasion is what I'm supposed to do, she gave me some extra ideas to try..  She also said that since I thicken their liquids with Thick It I actually need to get even more fluids in them because the Thick It sucks up some on the fluid converts it to a starch (or something like to that affect).  So I will be more aware of how much they are drinking now.  And we both agreed that there are sensory issues that we need to deal with as well with a speech therapist.

Also, I got a recipe to make my own rice milk.  My husband told me before that I could do this but I didn't think I had the time or patience to add another TO DO to my list, but I have been informed that its very easy and it would save us a ton of money.  We spend an average of $50 a month just on rice milk.  I guess I'll fold and give it a try.

Thanks for all the thoughts and prayers!!  Again, God has been so good to us with the care we've received and Caleb being on his best behavior (despite immediately YELLING at all medical staff that enters the room and is about to touch him..lol)

Day 7 and we're FINALLY home from hospital

Today, (Tuesday) we finally made our way home. We are on steroids and albuterol treatments three times a day for the next week but by golly we're home. Now its time for me to get the house back in order after a week away....ugh!!

Here's one last photo of Caleb rocking in the chair before we left





Glad to be home!!

Day 6... one down, one more to go

Tonight Isaac got to come home at 8:30pm. He had to be off the oxygen for 24 hours before he could be released and the doctor felt bad releasing one and not the other, but he had not reason to keep Isaac. So Tom took him home and let him sleep in his own bed and then brought him back in the next morning.

Here are some photos from day six:

Both boys IV's stopped working today so they were free to get out of the bed and put on their shoes and play on the floor for a bit. Here's Caleb reading the book "The Wheels on the Bus"


Here's Caleb asking to watch Blues Clues for the 30th time in a week:



Here's Isaac saying his good-byes to brother for the night, he has that look like YEAH I'm outta here:



Here's Isaac blowing kisses before they left:

Day 5 in hospital

Well today has gone pretty good. The boys are both eating and drinking better, they are playful and back to hummming all the time. This is something I actually forgot about. They are very vocal all day long either humming or singing and I haven't heard them for a few days, so today is an indication that they are feeling better. The doctor came in today and said he expects another day or so for discharge. They will be discharged when they can sleep unassisted by oxygen for a whole night. Doctors had their level requirement set at 92 for discharge and we've asked them to take it down to 90. So we're hopeful that tonight is the night. C'mon boys!!!

One thing Tom and I noticed today is how VERY observant both twins are. When a nurse comes in the room they start scratching their ears, which they do when they are upset but when they put on their rubber gloves they throw a fit. They KNOW they are coming in to do something to them. When the respiratory therapist come in to give them a breathing treatment they throw a little stink but they get over it pretty quick cause they know they are just getting their treatment. When a cleaning lady comes in they are social to her and dont hardly notice her, but when she puts on her rubber gloves to remove garbage or diapers they start crying... I'm actually really proud of them, this is a great thing :)

Tom and I enjoyed a day with them playing and being silly. I took lots of pictures today and made a little montage to share.

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

Hopefully tomorrow I will be describing our discharge.

P.S. Please keep Elijah in your prayers tomorrow I am leaving the twins here at the hospital with my mom most of the day so I can take Elijah back to the pediatric dentist in State College to finish a root canal they started three weeks ago. He's been in alot of tooth pain lately and its a different tooth than the one they are planning on working on tomorrow. We'll see what comes of the visit.

Day 4 in hospital....

Today was a better day. Boys watched ALOT of Dora and Barney, they have a much more productive cough and they seem to be eating and drinking a little more. Today was 80 degrees outside so it was hard to see the nice weather and be cooped up inside. The poor lil guys keep signing "car" they wanna go home. We got them out of the cribs today for a few minutes and walked them around the hallways in the wagon, so it was nice to do something with them today outside the room. Camille and Elijah stopped in for a visit and later Tristin came and played with them too.

Can I just say what wonderful friends and family I have. My friend Kristen has helped us so much with the older kids and my mom and sisters have all pulled together and been there for me when they can. It gets really boring sitting in the same little room for so long with nothing to do. I love the visits!!!

Here are some photos from today:

Wagon ride to visit Big Bird


Caleb's crabby face


Watching TV together


Visit from Camille and Elijah (Elijah spilled drink right before photo)



Caleb's nap