Thursday, May 30, 2013

Only in Rhode Island

I fell asleep last night before blogging. Sloane and I had a very busy day together and separately. I was spent. As was Sloane, because at girl's dinner with the aunties she said to the waitress as she held the small beverage menu open "excuse me, can I have a red wine?"  No, I am not joking. It happened!! We all bursted out laughing!! Now, I know many other toddler parents would be horrified at this but, we are raising an almost 3 year old turning 15 so it wasnt that bad! Ha. I am thankful she didnt try to order my drink of choice...an extra dirty martini rocks on the side...that would have sounded worse!! LOL

Going to Children's is still nerve wracking for me. I am seasoned, but it still gets me. On Tuesday, I was especially out of sorts when we got to Radiation because I forgot my cell phone in the car. Visions of it being stolen were tormenting me. I had just taken pictures of Sloane that I hadnt downloaded yet. My hubby also couldnt let the look of panic coming over my face go easily so he spent a few minutes razzing me about the valet guy who was now calling India using my phone!!

The mood certainly was not Rainbow Dreams. And then an "only in Rhode Island" thing happened. Around the corner came some friends who hold a special place in our hearts. They, too, have a child with a health concerns and were at Children's for some testing. I hadn't seen them since Christmas time and their immediate presence brought peace to me. Ryan's health concern is more involved than Sloane's, but we have shared many stories and experiences. I know Ryan and his parents through our primary NICU nurse. I have blogged about Donna before.....LOVE!!  Donna = Godsend. I still revert back to the tips she taught me almost 3 years later. For example, when Sloane had croup 2 weeks ago, I kept looking at her lips recalling that Donna said...to look at her lips, see if they turn blue, thats when its a problem. Ryan is Donna's grandson. Over the years since our NICU days, we have spent time with Ryan and his family. They are the kind of people who make you want to take your shoes off and relax on their couch.

Seeing Ryan's parents brought calm to me. All the reasons, I need not say, but I immediately felt eased. There is something about sharing our medical journey with another family who understands it that brings you back to baseline. Calling me silly (as many do), but I think it was the smallest divine intervention to help me find my center for the day!

After I centered myself, I was far more focused. And what did I focus on....feeding tubes! So many of the babies and children I saw on Tuesday had feeding tubes. I dont want to make light of them but it was like they were a dime a dozen. Let's be clear, Sloane's feeding tube initially sent me over the edge. It was anything but commonplace to me. Yet, here I was surrounded by them and they all looked quite normal. Normal right down to the mom who took out a glass bowl of pureed food and began pushing the food into her 10 year old son in the middle of Dr. Rahbar's office. It made me reflect on our experience with Sloane's feeding tube and wonder why it upset my center so deeply.

Tuesday, May 28, 2013

The Paper To Prove It

Let me first say that today went well.  Sloane's swallow study went as best as could be expected. She did not aspirate any of the 5-6 sips she swallowed, but she did not take any large sips or drink continuously. Basically, Sloane saw the white chalky barium in her water and apple juice and then on her watermelon and simply refused to eat or drink. The barium approach is not ideal at all if you ask me! All of my assumptions that Sloane would preform because she was older and follows directions better....did exactly what the old adage says...made an ass out of you and me!! Sloane must of missed that window of opportunity because what we got today was...I want the real water, that's not big bird apple juice, yucky!!!

Nevertheless, Sloane passed her swallow study and I have the paper to prove it.




We waited well over an hour for Dr. Rahbar, but that is not very unusual. The timing was a bit difficult though as we rounded the corner to naptime. Sloane was a bit out of sorts...falling over her own feet, singing songs loudly, and twirling around. Think tipsy adult on the dance floor!

Dr. Rahbar in his own words said we could not have asked for better results on the swallow study. I would have agreed if Sloane had drank more and faster. We chatted, as we always do, about our parental concerns. Dr. Rahbar is firm believer that we as parents have the most valuable information. My hubby and I were both clear that we feel as though Sloane is aspirating on large gulps and consecutive swallows neither or which we saw today during the study. We also discussed my other concerns of the wheeze and out of breath issues when Sloane is overly active.

Dr. Rahbar stated that he would like to take another look/scope in Sloane's airway based on our discussion. We could do it soon OR wait thru the summer and revisit that approach in September. We chose waiting until September. There is a catch though......if Sloane gets croup or pneumonia before the September approach then we need to schedule the scope at that time. There is no reason to wait until September at that point, he will want to get in her airway sooner than later. We were comfortable with this course of action.

Today went well medically. Tomorrow I am going to blog on the emotional reality that comes along with a trip to Children's. A higher power paid a visit today.......

Monday, May 27, 2013

Rainbow Dreams

Tomorrow is it! The 4 of us (sloane, me, mammie and Taylor Swift) are heading up to Children's for our swallow study and follow up with Dr. Rahbar. A month later than expected, but it is all good. Sloane is better. She has one drippy nostril and the occasional wet cough, but nothing too dramatic to make me think about changing tomorrows appointment. Although, I'll never say never since last month, I canceled at 3am the night before. 
 
My hubby is meeting us at Childrens. That's when you know it's a an important appointment when the Big Dog comes. Somebody has to work around here. LOL Mammie and I go to all appointments and they are all significant, but a swallow study ups the ante. I am excited and anxious to see Sloane swallow tomorrow and to watch the path the liquid takes real time on the x-ray screens.

We had dinner with a friend on Saturday night and I very boastfully was telling her how I am prepared for tomorrow's appointment. I looked her in the eye and stated the facts: we have traveled this journey for almost 3 years and there are no more surprises to come in our laryngeal cleft world. I felt good saying it. The Big Dog agreed and then said "Tuesday is a big day. Either Dr. Rahbar is going to discharge Sloane or schedule her for a 2nd surgery. There is not going to be any gray area." You have to know Sloane's daddy...its black or white, there are no rainbow dreams in his world. And then I looked my friend in the face and said "I am not at all prepared for that." I had not given that much thought at all. Rainbow Dreams...folks...I love them!!

I know Sloane is aspirating. I assume that those aspirations are not affecting her to negatively because she has not had pneumonia since December. The swallow study tomorrow will clarify any of my assumptions.

We see Dr. Rahbar tomorrow right after the swallow study. Its results will shape the content of our appointment and the mood. I do have a list of topics other than Sloane's laryngeal cleft to talk to Dr. Rahbar about: Sloane's pneumonia this winter, the ever so present wheeze, our croup stint, and Sloane's new inhaler.  They will either be the focus of our conversation or take a back seat to when, why and how's of a 2nd cleft repair surgery.

I told Sloane that we are heading up to Children's tomorrow to see Kara, our swallowing therapist, and Dr. Rahbar. Her response was the standard "I don't want to." I can only hope that the constant ringing of Taylor Swift's voice will get us there peacefully.



Friday, May 24, 2013

Balance

I am going with allergies! After pleading with Sloane to chew the yummy purple pill (children's Claritin), we decided to crush it into water. My hubby presented it as a new purple drink and I spent the next hour pushing her to drink. We got about 3/4 of it into her and her cough as well as runny nose stopped rearing their little heads. My story, tonight, is that it is allergies and I am sticking to it! LOL

I just want to get to Tuesday so if believeing it's allergies helps me not obsess than so be it! I can obsess about things that arent as big as they seem and its not a good quality! I've been trying to balance the realities with the quiet obsessions I have in my head. 

I am blogging right now in a very quiet house. My hubby and Sloane are having a dinner date. I am never in my home at night alone. It is far to quiet and I don't like it. I can hear the key strokes on the ipad which never occurs. I, myself, am going out to dinner with a friend. I have been trying to do something social for myself once a week or every other week. Something more than a trip to Target alone I mean. I feel guilty as I walk out the door, but completely refreshed and relaxed when I return. 

Last week, it was a night time trip to the mall with a friend and I felt like I had a mini vacation as I shopped without managing a toddler. Lately, I spend more time returning items because I am unfocused while purchasing having my side-kick with me! Tonight is adult dinner and I am so looking forward to it. I wish I could understand why stay at home moms have so much guilt about taking time for themselves. I always think....you are not working, you have all day home, why do you need more time? But I do. I need time for me. I am thankful that I have a hubby who understands that.  

So I am sitting here in my favorite jeans and a pair of stilettos thinking about the glass of wine I'll be having soon, while I am trying to dull out the questions running thru my mind about what Sloane and her daddy are doing right now because I miss them. It's hard to balance them both. 

Thursday, May 23, 2013

I Don't Get It

So Sloane is sick again. I'll say it before you do....WTF!!! I can not publicize if it is a cold or allergies because I don't know yet. There is a nasty post nasal drip cough going on and it is really getting under my skin because it is keeping Sloane awake during naps and over-night. We tried the Benadryl tonight for the drip and to help her sleep and it did not go well AGAIN! Sloane's reaction to medicine is violent (didnt think of the adjective myself, an auntie did....but its completely true). Sloane is violent when it comes to taking medicine. Sloane should and could have many medical aversions at this age given all she had been through during her first 2 years of life, but medicine wasnt one I was expecting seeing as though all her meds were administered through her g-tube. I dont get it???

Taylor Swift has become the 4th person living in our home. Seriously, it is like she lives here. Sloane is in awe of her and her music. Now, I assume most almost 3 year olds are addicted to Minnie Mouse or Fresh Beat Band. Not Sloane. My child has developed a complete obsession with Taylor Swift. We have downloaded a few of her songs on our phones and I went old school and purchased the cd for the car. There are night-time pleas of YouTube viewings of Taylor belting out a tune before bed. I have to admit some of her songs are catchy, but not catchy enough to listen to them all day, everyday. I always wondered about children who watched the same movie over and over again.......well, I have the child who listens to the same song over and over again.

Here is the scene in the car: Sloane requests her song "We Are Never Getting Back Together" and we listen to it. When it is over, she tells me "momma, its your turn" and I listen to a song of my choice from the RED cd. And then, when my turn is over, Sloane requests her song again. And this happens while we are driving in the car ALL THE TIME!!! Taylor Swift is the 4th person living in my world. I don't get it??

Monday, May 20, 2013

Psssst, Psssst Ting

On last Thursday, I finally called Dr. Reibman about the "coughing fits" and frequent wheeze sound. She felt as though the coughing fits where bronchial spasms as result of the viral (croup) infection. So today, we went in at 4pm for a tutorial on Sloane's new inhaler. We are going to use it once a day for one week to see if it diminishes the coughing after active behavior. I was also happy that Dr. Reibman heard the ever so slight wheeze while we were there. She commented on it and also noted that Sloane was at rest and had it. This I told her it is common. The inhaler may also help it too.

I had talked to a dear friend before the appointment who took away some of my anxiousness away. She said "oh, Sloane is going to think she is a big shot with that new gadget." I hadnt thought that at all. I was more concerned that it would be a scene of "hold the toddler down." But once she said it, I thought....hmmmm, maybe???? And she was right!! Sloane gave us no issues with practicing with it at the drs. today. She calls it her "ppsstt, ppsstt ting"

Now, of course, I will review this all with Dr. Rahbar and his team next Tuesday to get a stamp of approval. I am certainly not against seeing any type of specialist needed to address this if it goes beyond a ped or ENT issue.

This morning, we went to visit our family friends with the triplets. Alex, Lucas and Sam were born in July two months early. They are growing by leaps and bounds now and pretty fabulous if you ask Sloane. She loved them! What I was most blown away by was the triplet's mom! Lori runs a tight and organized ship. Like John and Kate plus 8 before fame ruined their lives. I was amazed at how neat and scheduled their home was as well as their routine. It was inspiring on one hand and a reality check on the other.

I have closely followed the triplets journey for over a year now as they were fertility babies like Sloane, spent time in the NICU like Sloane, had swallowing difficulties like Sloane and one had a feeding tube like Sloane. Not to mention, that the triplets share the same surgeon and ped as Sloane so we talked a lot. I was always surprised by Lori's calm approach to everything. Calm isnt a word I would use to describe myself way back when in the NICU. Seeing the triplet's house today and watching their routine made me think that sanity with multiples is possible AND made me think "what the f was your problem?" that you were so crazed about one child with one medical need?? Lori is dealing with 3 babies all with their own set of needs and appears to be handling it with a sense of ease.

It was nice today to have someone to talk to about all the medical stuff. We chatted about things that we, as moms, have in common because of our child's medical concerns. We compared our children's Mickey Button sites and laughed about the evilness of reflux. It was refreshing to share war stories and swap ideas. I had always thought that when I was in my darkest hours of reflux, feeding tube, colic, and laryngeal cleft how great it would have been to have a mom friend who also had a child with a medical need. My conversation with Lori today confirmed that! It would have balanced me out some.

One week until Dr. Rahbar......healthy thoughts everyone so we make it to our rescheduled swallow study!

Tuesday, May 14, 2013

Third Time is a Charm

Sloane is finally better! There is a cough here and a cough there, and a boogie wipe now and then but we are on the upswing! The coughing fits after running around are still occurring so I'm thinking its time to call the ped. Id like to get her thoughts on this. Its like "smoker's cough" coming out of a toddler. I dont understand where it is coming from??? My hubby is also feeling better. I can only hope that we are entering an "illness free zone". 

My third Mother's Day was perfect! I couldnt have asked for a nicer day. Truthfully, my first mother's day was not all I dreamed it would because we were in the throws of laryngeal cleft world and we could not relax enough to enjoy anything in our life. My second mother's day was lovely but not complete.  My hubby didnt spend it with us because he was recovering from surgery. 


The third time is the charm as they say! Sunday was just as I envisioned Mother's day way back when. It began with Sloane kissing me on the lips with a "Happy Mother's Day momma. I love you." and it could have stopped there. Honestly, what is more perfect than that??? If she didnt say Happy Mother's Day 20 times throughout the day, she didnt say it once! I actually video~ed her saying once to me to have it on film. My mils idea and a wonderful one!!

Today was a cuzzy day. We spent most of the waking hours today with Ani and cuzzy. My niece turned 2 last month so Sloane and Stella can be one in the same. They are completely different in physical attributes, but the same in their fierce attitudes. Sloane is usually hugging, kissing and hanging on Stella saying "I love you." Stella is a bit more reserved with her emotions so she will run away from my snuggle bug. LOL They get along great, but there are fights usually over toys and occasionally over a grandparent with words such as "she is my mammie" or "thats my poppie". Today, though, there was a physical altercation. 

Ani and I were in deep fashion conversation when we heard the cries and saw the scene. Stella flat on her bottom crying her eyes out. My snuggle bug NOT standing up looking very guilty. I knew it immediately and simply ask "did you push Stella?" and the answer was "yes, momma. she wants to touch my things." Stella recovered and Sloane spent some time sitting quietly by herself. I didnt stop thinking about there it was.........the only child syndrome!!! 

Preferences

Tuesday, May 7, 2013

Green Thumb

Sloane is now one of those kids I used to look at in public places and wonder why their mothers didnt keep them home as they cough so deeply and loudly it hurts. She is that kid. Her runny nose is starting to dry up, but the occasional junky cough is still there. Of course, I couldnt wait to talk to our actual ped to discuss last week's events as I assumed she would be back from vacation. Dr. Reibman assured me that the wet, junky cough can linger after croup for up to 10 days. All news to me as Sloane has never gotten the wet cough after the croup. In the past, we have gotten very lucky.

I still have my cough. And I am pretty sure that Sloane's "puppy germs" as my hubby calls them did in fact make him sick. The house needs to be aired out and we need to all get back to baseline again and start over. lol

Sloane is grumpy. Grumpy, at times, like you want to cry with her because nothing makes me happy and she lets you know it. Its been a battle for a few days. She wants to do nothing but lay around and be lazy. Which is fine, except ordinarily we dont do that so its an adjustment on my end. The few times we have taken her out to get her sillies out, she ends up in a coughing fit that takes minutes to end. I feel so badly. If this continues through the end of the week, Ill be calling Dr. Reibman again.

I often wonder if Sloane is going to be the child with asthma. This thought has been a topic of discussion over the past year and half with her doctors because she gets so winded so quickly. I have been told by them that the term "sports asthma" is not used anymore. It is simply does asthma or no asthma.

The girls are alone for a few days. Footloose and Fancy Free. NOT!! You see, we had grass put in over the weekend. The backyard is phase 2 of the renovation. Now, let me say I do not have a green thumb in any way. I have never been interested, nor will I ever be. It is not my thing. I feel as though at 40 I can make these statements. If im not into something that is present in my life now, its highly unlikely I will be in the future.  And the new soon to be grass confirms it!! No, green thumb!!! I am worried about the grass because I want it to grow so I am being diligent BUT.....

Watering this grass is like a 2nd job. I am out there moving sprinklers, detaching hoses, attaching nozzles, and hosing areas all day. It is a big pain if you ask me!! My hubby did want to put in sprinklers, but I talked him out of it as we have no idea if we will be staying in this house long term so sprinklers weren't a top priority on my list. This may have been an error on my part. LOL
Right about now, as I am about to put on my rain boots and head out to tackle another area, I wish we had sprinklers. I am very thankful that it is going to rain tomorrow!!

Wednesday, May 1, 2013

Sleep, Please

Sorry for leaving everyone hanging last night. I was so tired for Sunday night's events and yesterday that by bedtime I shut off the lights at 8:30 and wished for a hibernation type sleep. In sharp contrast, last night's sleep was more like a scene from the movie The All Nighter. Sloane was beyond restless and not much deep sleeping occurred.

Anyhow, back to yesterday. We went back to the ped and confirmed our croup diagnosis but Sloane also has a bad cold. In the past, they havent come hand and hand, but as luck would have it they did this time. She has a nasty cough and a runny nose. It hasnt been pretty.

This is Sloane's first real cold battle. How lucky are we??? We have had runny noses, but this is the first time she has had the whole gamut. Its hard to manage a child with a cold. I cant believe I am saying this since I have managed much worse in my 3 short years of motherhood, but the cold is not fun at all.

We have the drippy nose, the deep cough, the chapped lips, the dry face from all the nose wiping, and clinginess all on one tiny very blah tired child. Not fun at all for the whole family. Meanwhile the parents arent to hot either, I am exhausted and my hubby must be ready to collapse as he left this am for a trip.

So much to surprise, there are no meds for a cold for a child according to my ped. I would have liked something to help with her cough, but no dice! Sloane's cough is keeping her awake. She is beyond sleep deprived right now. They did suggest Benadryl for the post nasal drip portion of it and to help her sleep. I would like to tell you that I gave it to her, but the truth is I didnt. I tried, but Sloane was a raving lunatic and I simply couldnt get her to swallow it even with the syringe. Ill say it again: giving meds to a child borders on child abuse. I actually cant believe what happens to get my child to take meds. Tonight though, a med, a sick child, and a tired mom all didnt jive.

On a brighter note, Dr. Rahbar's office was completely understanding about my 2:30am email cancelation. LOL. They rescheduled Sloane for May 28th. By the look of things around here today, we may not have our groove back until then.

hahahahahahahahahah