Day 21: Therapy details

I have mentioned that L has therapy so many times on this little blog.  (Examples: here)  I do not think I have given a lot of detail about her therapy though.

L receives speech therapy, occupational therapy (OT), and special instruction.  We have been so fortunate to have some amazing therapists work with us.  Speech therapy works on mouth exercises to help her tongue, lips, cheeks all work better together.  Speech also works on some breathing exercises using back massage and some baby yoga poses.  And obviously, speech works on methods to encourage communication.  Occupational therapy overlaps with speech, with using activities to help her sensory issues and fine motor skills.  Special instructor helps with combining all of her therapies in games and activities appropriate for her age group.  Finally, we just recently started working with an interact team that is working on using alternate methods for L to communicate.  Her interact team recently added in a portable device that can be activated by L to speak for her (we just started working with her using the device so she does not quite have the hang of it yet).

L takes part in a weekly community group of other kids who also receive therapy.  The community group is run by therapists in the early intervention program and exposes the kids to a variety of activities that encourage speech, sensory stimulation, gross motor activities, following directions, and interacting with other kids.  Each week, they pick a different location and activities to expose the kids to.  For example, yesterday's meeting was at Krispy Kreme, where kids were able to play with the raw dough, watch the donuts being made, and then taste the final product.  Other meetings include playdates at parks, at a preschool classroom, at a farm, at nature centers.  L loves community group.

This fall, we added in another group called Dream Team.  It is sponsored by Special Olympics and is a weekly class for kids in early intervention.  It works on gross motor skills and general preschool skills like following directions, waiting your turn, sharing, and working with other kids.  L generally loves this class and has been known to give random hugs and kisses to other kids in the class.  She particularly loves going through the obstacle course and sitting on the parachute while we swing her around on it.  Her true personality comes out in these classes.  It is very clear that "hurry" is not in her vocabulary   Everything is done at her own pace, while she stops and smells the roses, so to speak.  And anything they do that involves singing or music, count L to participate and ask for more.

All of these therapies mean there is a lot of homework for us, me especially since I am home with her, and am a part of all of her therapy sessions.  And a lot of scheduling for all of her therapy appointments and arranging those appointments around her doctor appointments and lab days.  Oh, and around regular life activities.

But our experience so far has been positive.  We love our therapists.  And we love seeing her progress, despite how exhausting and slow it sometimes is.  Our hope is that she will eventually require fewer and fewer therapies.  Currently, her biggest delay is in speech.  She can say some words, but something just has not clicked with either pronunciation or the ability to come out with the words.  We see the wheels turning, and she uses her signs so willingly.  She now uses over 50 signs regularly.  It really has been a blessing that I worked with her on it because we depend on those signs all day long.  We have faith that the words will come in time.  She is slowly closing the gap in all other areas of development (and is on target from what we can tell for cognitive and emotional development).

All in your own time, little one.

The Reality of Summer Break

I didn't write on my blog this summer.  I wish I had some really exciting reason like we were traveling and living the life.  I hesitate writing the truthfulness of how things were, because quite frankly, I wish to forget some of these moments. But in my (continued) effort to be completely honest about my journey as a mom to a child with complex medical and developmental issues, here it is: the truth.

The real reason I did not write is that L was home for the summer.  I was looking forward to the summer home with her.  I had great plans for outings and playdates and adventures to make memories.  And we certainly had some outings and playdates and adventures.

But the truth is, it wasn't pure bliss.  In fact, some days I was so out of patience that as soon as Ian walked through the door, I said "please, I don't want to see or hear her for the next 15 minutes."  Saying that to Ian was embarrassing.  It produced tremendous amounts of guilt.  Carrying that guilt was awful: I was constantly questioning what kind of mother I was.  I kept thinking, we are so incredibly blessed to have L here with us, alive and thriving, and I couldn't wait to be away from her?  What kind of mom did that make me?  What is wrong with me?  All of these other moms are excited to have time with their children over the summer, and here I am, counting the days until she goes back to school.  

Almost as soon as summer break started, I learned a lot of new information about my girl.  L has transition issues - this, I already knew.  I just didn't understand how severe that issue was until the summer started.  She has difficulty regulating her emotions when there are transitions.  Like getting her dressed, getting her out of the house, getting her to move from one activity to the next.  I had not realized that her being in preschool 5 days a week was providing the stimulation (or something) that helped her regulate.  So take away that interaction with other children, that structure, and she fell apart.  She had tantrums countless times per day.  And when I say tantrums, I mean complete meltdowns for about 1/2 hour.  The tantrums typically centered around her not being able to tell me something - that she wanted to do it herself, or to do an activity a certain way, or that she wanted to do something else.  I felt like I was walking on eggshells asking her ahead of any activity to prevent the tantrum, "would you like to open the package of [enter food] or do you want mama to do it? do you want to pour it in the bowl or mama?  Do you want to put the blanket on the bed like this, by yourself or with help?  You show me how you want to play!  Where should mama sit?"  If I did anything out of order, tantrum ensued.  Nothing I said or did made a difference.  The fact that this was happening multiple times per day was exhausting for both of us.

She was impossible to get to go anywhere.  It was a fight to get her dressed which is saying something because under the best of circumstances she has trouble.  The slightest thing would set her off and there was nothing to be done but hold her and wait for her to calm down.  And when we would venture out, she was clingy, she was anxious at the thought of not being next to me.  She didn't want me out of her sight.  What had happened to my happy girl?  What was going on?

About the same time that I theorized that her frustration was a result of not being in school, we started her in private interaction group therapy (which is ridiculously expensive) to help.  Amazingly, the days that she had therapy, she had fewer tantrums.  The days she had no therapy, we were back to those long and frustrating days.  After a couple weeks of documenting her tantrums, I realized that there was a direct correlation to fewer meltdowns on therapy days.  Clearly, L was craving that social piece.

In addition to private group therapy, she was approved for extended year services through her school.  Unfortunately, with a diagnosis of "language delay," she only qualified for one hour twice per week.  So clearly, that was not going to cut it.  While it was helpful to know what she needed, it wasn't practical and we weren't financially able to provide therapy on a daily basis.  So it meant most days I was just hoping to get through the day.  Lots of days of calling Ian in tears.  I was exhausted - mentally and physically.  Even on therapy days, I couldn't leave her side at therapy (we tried, she cried the entire time).

To say I was excited for her to go back to school is an understatement.  I wanted my happy girl back. I wanted her to have what she so desperately needs.  Obviously, there were selfish reasons as well: I wanted to be able to work out and take care of myself.  I wanted to be able to dedicate time to my own doctors appointments and job searching.  She stopped napping in November of 2013 so her back at preschool is the only time I have to myself.

We are two weeks back into school and it is incredible to see L's change in demeanor.  Yes, transitions are still difficult.  Yes she has some tantrums.  But she is pleasant the majority of the time.  She is more independent.  She isn't ready to scream her head off for the rest of the day because she didn't get her way or cannot tell me what she wants/needs.  And when she does tantrum, the episode is much quicker and she gets back on track sooner.

This summer was a learning experience for all of us.  We now know that L absolutely must have camp or school during the summer.  She must have social interaction with other children multiple times per week.  She must have structure and be encouraged to be away from her mama.

I want to add that yes, we did have some great memories and outings this summer.  We had joy each and every day.  It wasn't all bad and tantrums.  But we certainly had a lot of it!

Now we know.  And it's a new school year...thank God.

Decisions

Just found Luca playing Angry Birds on the ipad.  Not just playing it, but playing it correctly.  Seriously?  I guess I should be happy that all of her OT therapy is working.  How's that for fine motor skills!

Speaking of therapy, we are starting to prepare for the big decision of whether to transition out of infants and toddlers, into the school system.  For those of you not familiar with this process, here is a very short version. At three years of age in Montgomery County, parents of children currently in MoCo's early intervention program (called Infants and Toddlers) have to attend a meeting with specialists to review the child's entire history and present needs.  At that meeting, it is determined whether the child is eligible to continue receiving services.  If found eligible, parents decide whether to continue with the current therapy scheme where therapists come into the home or daycare and provide whatever therapy the child needs.  If the parent decides to transfer into the school system to meet the child's needs, then the team of specialists decide what program will best meet the child's needs.

It is a big decision.  I attended a tour of one of the school programs yesterday.  There are so many possibilities as to what the team could decide is best for Luca and as her parent, I worry that we are making the right decision and that the team will find the perfect fit for her.  Should we decide to transition to the school system, we are leaving her care in the hands of others and the control-freak in me worries about that.

We have been weighing the pros and cons of all of it.  A huge pro to transitioning into the school system is that Luca will have more interaction with children.  She is social and loves play dates and I think she really needs to have some independence and more experience with children her age.  Transportation is provided and the thought of putting a backpack on her and putting her on the bus on her designated days makes my chest constrict and my eyes well up with tears.  Oh and a con to transitioning into the school system is that she will be exposed to all those yucky germs.  I know that at some point, she is going to have to head off to school and will be get sick as a result of it - hopefully just normal kid stuff - but I worry that we are doing this at the right time for her medically.

She is still such a baby to me.  My baby.  Is she ready for all of that?  To go off on her own?  And is her body ready for that?  Are Ian and I ready for her to be on her own?

Obviously, we have lots of research, talking, praying to do on this.  I pray that we are guided as to the best decision for Luca.  If transitioning is right, even if the thought of sending her off on a school bus scares me, I will deal with it.  But I just want to be guided as to what is right for her, at this time in her life.  Such big decisions!  And if I am stressing this much about this type of decision, I can only imagine how stressful the types of decisions will be as she gets older!

No matter what, thank goodness we even have the opportunity to make these decisions.  And that, my friends, is something I will never forget.

Applications Done

I am sorry I haven't posted much. Three nights ago we decorated our tree while listening to Christmas music. It was very cheesy and cute and fun all in one. Here is a picture of Tessa and Ian in front of the finished product!



I had my first day of therapy on Wednesday and wowza, it was not the most comfortable and yesterday, I was in a whole lot of pain! I just had another day of therapy today and I was not a happy camper. I am not even walking on it yet and they put me on a bike today for 5 minutes - ouch! They make me move it all around which hurts, then push it and pull at it, then massage it (which sounds nice and relaxing but hurts like whoa), then put electric stimulation on it and pack it with ice for 15 minutes.

We received our printed Save-the-Date cards yesterday!! We had heard mixed-reviews about VistaPrint after Lauren had placed our order, so I was anxious to see how they came out. I love them! Minor issue is that they way they were cut means that one of the sides has more picture between the pink border and the end of the card than the other side does. I'm sure nobody else would even notice it - it's that little of a difference. No big deal in the end. Overall, I'm very happy with them especially for the price. We will be stuffing the envelopes and getting them addressed so they are ready to be sent out right after the New Year. We're waiting until after the New Year so that they don't get mixed in with everyone's holiday cards.

So the title of today's post has to do with my law school applications. They are officially DONE! I submitted all except three of them last night! Now I'll start my impatient checking of applications - it's an obsession I think. I really am so unbelievably impatient that I will check the application status about 5 times per day (on a good day!).

Tonight, Ian's parents are coming down to our house for some take-out. I hope I don't fall asleep at the table! Sunday, we are going to some Christmas show with Maggie at the Kennedy Center. Should be fun!

Hope everyone has a great weekend! Don't fall on the ice.

The impact of speech

I read Carly's Voice: Breaking Through Autism recently and it raised so many fascinating questions.  And, this book was truly inspirational.  What that family went through to get to Carly is incredible - I highly recommend this book especially if you are a fellow special needs parent!  Carly is autistic and practically non-verbal and it wasn't until she was older that they had a breakthrough.  After the break-through, she goes on to be able to take typical classes for her age and even some advanced classes.  And her writing is beautiful.

Have you noticed that speech can mean so many things?  As in, the lack of speech, the way one speaks, can all be judged to determine one's intellect?  Specifically, verbal speech.  If someone does not speak well, are they not as smart?  If someone speaks beautifully, but says silly things, are they not as smart?  If someone is unable to speak, are they judged in a negative light?

Luca's biggest developmental delay is in speech.  She is within normal range for receptive language (as in how much she understands, how well she can follow directions, point out appropriate pictures and items, etc.).  But her verbal speech is lacking.  She is trying so hard and she watches my lips closely when I pronounce things for her.  She can say some words well, and some syllables.  Putting syllables together is where she is struggling.  She has dozens of what we call "word approximations", as in words that she attempts to say and because we know how she attempts to say those words, we know what she is referring to.  She primarily communicates through sign language, pointing, etc.  She knows about 100 signs and uses tons of them throughout the day.

I cannot tell you how exhausting it is doing all of this homework for her speech.  And I have high hopes that it will all eventually click for her.  It breaks my heart when she is trying so hard to communicate something to me, grabs me by the face and repeats the same sound over and over and over again, then comes up with a new sign to try to communicate it to me, and I have no idea what she is saying.  I cannot imagine how frustrating it must be to know what you want to say, and not be able to get it out.  She must feel so trapped sometimes.  When this happens, it often leads to many tears and possibly even a tantrum, and I cannot be angry at her in these times because these are instances beyond her control.  It breaks my heart to see my child struggle with anything, especially with something that is such a basic and vitally important function.

I woke up in tears recently. I had had a dream that she was speaking.  She had come up to me, grabbed me by the hand, and I was in the middle of cooking and said to wait a second, and she just came out with a complete phrase.  In the dream, I whipped my head around and exclaimed "what did you just SAY?!" and she repeated it perfectly.  Clearly, this struggle is something that worries me, even while my mind should be turned off sleeping.

We have excellent speech therapy and we are talking about her options for therapy come this fall when she can start a more intensive program.  We also have plans to remove her g-tube later this spring if she continues doing well medically, and that should help her core muscles.  There are some studies that link speech delays with g-tubes, but we shall see if it helps when we remove hers.

At the end of the day, I still worry about her.  I am too well aware that delays as a cute little kid are perceived very differently than delays as an adult.  And I worry that she will be judged.  People in public always ask "why doesn't she talk" and I want to scream at them in response.  Strangers, judging already.  It makes me sick and I want to run and protect her from such judgment.  Interestingly, kids seem to accept her for exactly who she is.  Older children will say "why doesn't she talk" and after I offer them a very short, "she talks with her hands, she does not know how to use her voice yet", the kids normally accept the explanation with a shrug and turn and take Luca's hand and say "come on Luca" and off they go playing, the lack of speech from Luca is a nonissue.  The judgment typically comes from parents, the adults.  And I so wish in those moments I could say, look at the non judgment from your child, and learn from it.  Oh the innocence and beauty of children, why are we not paying more attention to their pure kindness and learning from it?

I want them to see Luca through my eyes.  She is beautiful - I do not mean physically, but as a person.  (Although, yes I think she is pretty stinking cute too. )  She is hilarious.  She has such personality.  She is so feisty.  She has lived through more than most.  She is smart.  She is the kindest child I have ever met - so willing to give love to anyone and everyone.  She will share any toy with any child as long as you are there with her, spending time she her.  She has empathy and compassion that we should all learn from.  If she sees someone cry, she is the child in the room who stops and wants to go offer support.  She is curious.  She is a daredevil, always up for trying anything.  She is so focused.  She is a free-spirit, always going at her own pace, staying true to herself.  She is willful, sometimes frustratingly so, but thank God for that strong will.  She finds joy in simple things.  She is loving.

My sweet girl - I will fight and fight to get through to you, to help you.  I hope you continue to be you and I pray that you are surrounded by love and understanding, always.  And I pray in time, that you can communicate in anyway you wish to.  Until then, I will continue dreaming of the day that you speak to me.  People say, "oh when she starts talking, she'll drive you crazy with nonstop talking."  Oh how that is my wish.

Outside obsession

I swear this child would be outside all day if I let her.  When we finally do come inside for a diaper change, or drink, or food, I battle a very willful little girl who tantrums because 5 consecutive hours outside is simply not enough time.  Gosh, I never let her do anything!

If you showed up unexpectedly on a nice day, you would likely find Tessa lazily laying in the sun (or shade if she has gotten too hot), Luca stomping around the yard or house somewhere with very dirty hands and legs, and me following behind, trying to persuade her to come inside to give my allergy eyes a break.

With the nicer weather, her weekly playgroup has been held outside at various playgrounds.  And we even had her physical therapist meet us there to do her therapy outside.  We might as well do therapy exactly where she wants to be, right?  Hopefully this obsession with being outside from morning to night will die down as things heat up outside because my eyes are on fire by midday.  Get me some allergy drops over here!  (Actually, totally already using them and they do nothing.  Any other tips?)

Speech

As most of you know, Luca receives speech therapy.  She uses her voice to express likes and dislikes, to alert us, etc., but does not truly have words yet (except Mama - it is the only word she uses regularly and appropriately).  She does imitate sounds and will imitate the way our mouths move when we say a word. 

She has a lot of frustration from not being able to express her needs and wants.  So I started using signs with her and she started picking it up pretty quickly.  I took a video about 1.5 months ago of her showing the signs she knew at that point.  Since then, I keep a record of all of her signs so we know how many she knows, and so we can explain to anyone else what she might be telling us.  As of right now, she probably knows and uses about 40-50 signs.  She is picking up signs more quickly than Ian and I can learn them!

I cannot wait to hear her use words.  People keep saying that I will want an "off" switch when she does start talking.  Well, right now, I am so longing to hear her talk that I disagree with wanting an "off" switch.  It will come.  Her therapists keep reminding me how far she has come.  She is making improvements and showing the desire to communicate.  They also remind me that often g-tube kids have weaker core muscles, which are needed for breath control for speech.  Soon, we will be adding physical therapy into her routine to try to work on breath control.  And in the meantime, I will continue to work on sign language to expand her knowledge there, while dreaming of the day she decides to talk to us.  Everybody keeps joking that when she does talk, she will come out with full sentences.  I will not be disappointed with that!

Her signing video (that she likes to watch and has memorized).

Day 26: Monday, Monday

As we eat Thanksgiving with a big group, we do not always get a lot of turkey leftovers.  One of my favorite for leftovers is to be able to have turkey sandwiches.

Today has been one of those Mondays.  Both Luca and Tessa are craving all of my attention because they have had so much attention from family over the long weekend. One of those days where I feel like no matter how much I do, I have to back track and redo it because between Luca and Tessa, one of them destroys what I just did.

I swear this story will all tie together.

I roasted a turkey breast today to have for sandwiches and salads this week.  While prepping it, Luca screamed and head-butted my legs, trying to get me to move away from the turkey and pay attention to her.  I just focused on getting done what I needed to, and get that turkey in the oven so I could stop listening to the screaming.

When the turkey was done and resting on the counter, I had therapy with Luca.  I heard Tessa making a noise in the kitchen and went running - she was counter surfing for turkey.  I caught her just before she got to it.

After therapy, I carved the turkey to put it away so Tessa would stop being tempted by it.  All done carving, and look down to see Luca has taken a roll of parchment paper and unraveled it throughout the entire house.

Seriously?  Can't one of them just sit and behave?  One of those Mondays.  Is it 6pm yet?

Once again, I have gone astray from this little blog.  I wish I had some great excuse...but life gets busy around here and time just kind of slips by.  I mean to blog and have so many things I want to put down here.  But the days go by and I have to choose those free moments of quiet carefully.

I feel like Luca's assistant many days - managing her doctor appointments, phone calls to insurance companies, filing all of her paper work, doing her therapy exercises, chauffeuring her to and from her appointments.

And it seems like her little immune system is very sensitive.  While none of these issues have warranted hospital admissions (thank God), I sincerely hope and pray that we can have some better stability soon.  Since November, it has been one pesky little thing after another.  Colds, 3 ear infections, multiple teeth coming in, constipation issues, and currently, a pretty bad infection around her g-tube.  Last week for example, between hospital visits and pediatrician visits, we spent three days visiting doctors.  That excludes days of therapy at home.  And on the days we were not at the doctor's office, I spoke with her pediatrician every single day.

I want my little happy girl to be just that.  And while we get a good day or two here and there, inevitably one of the above sparks up and causes her discomfort.  And as a mama, it is incredibly hard to watch your sweet babe in pain or discomfort.  On days where she is happy, she is independent and wants to play and run around all day.  On the happy days, I am able to accomplish some things like laundry and phone calls.  On days where one of the above is bothering her, she is whiny and clingy and it leaves me another day of getting nothing done, and I lay my head down at night exhausted, both mentally and physically.

I am hoping with the spring weather around the corner, that it will bring with it some stability.  I want my happy girl back!  If nothing else, it will allow us to get out in the sunshine and provide some new distractions and adventures.

Transition

About a month ago, we had L's transition meeting.  I talked briefly about this meeting in this post.  We've known about this meeting for months.  This meeting occurs before a child turns 3.  At 3 years old, the county reviews whether the child is eligible for services for any delays, and if so, the parents can decide to continue services as they have them in place currently through early intervention, or decide to terminate those services.  If those services are terminated, the county (who has already researched availability and the child's needs) recommends a program or services for the child.

There is a lot more to the process than that brief description.  But that gives a brief overview of the process.  We had been preparing for this meeting for months.  The week before the meeting, I printed all of the laws on delays, eligibility, and rights of parents.  I wanted to go in prepared to advocate for L if needed, but hoping that the meeting would go smoothly.

We know L benefits from social activities with other children.  But we also knew that L gets overwhelmed with bigger groups of kids.  Some of the programs we visited to get a glimpse at various options were great programs.  But none of them felt quite right to us.  They were too big.  Too little teacher involvement.  Or were not intensive enough for her speech needs.

As a result, we were nervous going into the meeting.  We prepared to terminate her current services, which was such a bittersweet thing to do.  Her therapists have been coming into our home for over 1.5 years now.  They have fallen in love with L, and L is so excited when each of them arrive.  They have done beautiful work with L.  They have seen her thrive in front of their eyes.  So to terminate services was in no way a reflection as to how good a job they are doing with her.  We just know that L is ready for a preschool environment.  She thrives with social interaction.  She is great with a structured environment.  And recently she has been more cooperative to doing her therapy with someone other than me or Ian.  Her therapists were all in agreement that she is ready.

As we signed that paper terminating the services, I felt my eyes well up with tears.  Then, the meeting continued into discussing what the team recommends for placement.  They chose a speech language class for her, 5-days per week, 2.5 hours per day.  They felt that it would address her speech needs and that as some of the other children in the class may have receptive language needs, that L can be the model for those children since she is not dealing with receptive issues.  She will also receive physical therapy while at school.  When they phrased it like that, Ian and I agreed that it sounded like the perfect fit.  The school is about 15 minutes from our house, and about 6 minutes from Ian's work.  Starting this fall, off she will go to school.

To start off, we will be driving her.  But we will eventually transition her to start going on the school bus.  (Just writing that sentence made me cry my eyes out.)

I was extremely emotional after the meeting.  Thinking about sending her off into someone else's care every single day makes my chest constrict.  She still seems like such a baby to me.  And to not be with her for all of her day to day experiences makes my heart hurt.  She is growing up.  So quickly.  We know she is going to do beautifully.  The hubs and I, less beautifully.  Hubs has warned me that he does not want to be the one to drop her off for the first few days.  He knows that if she cries when he goes to leave her, he'll just take her to work with him.

Big things.  Good things.  Sweet little L, not so little anymore.

"We're going to Miami, Bienvenidos a Miami" - Maybe?

I'm doing well on my health kick thus far! After posting on Wednesday about being on a health kick, I got the clearance from my surgeon to go full-force on exercising. YAY! I only have 4 more weeks of physical therapy left which means that the therapist is pushing me harder. Yesterday, I had the workout of my life with the therapist to the point that I was still slightly sweating an hour later when I was back at my desk. I also found out why our gym card doesn't work and Ian took it this morning to be reactivated. I posted a workout regimen on the mirrors of my bathroom at home to motivate me to get my body in motion (come on do the loca-motion). Good start thus far!

My mom met with DaVinci Florist a couple nights ago and was very pleased with their work. The great this about this florist was that while going through the ideas and flowers they had in mind based on pictures I like, they came up with a more expensive option, and a cheaper option. They are really willing to work with different price ranges. Well, their more expensive flower choices look like they'll come in about $600 cheaper than the other two florists - which would put us in under budget for flowers. Under budget makes me oh-so-happy:)

We are starting to schedule cake tastings. This is one part of the planning that Ian refuses to miss out on! We know pretty much what we want so it's just finding the cake we think tastes best and who is the most reasonably priced.

News on the law school front: I was offered a substantial scholarship from U. Miami. As of right now, I've gotten into 6 of the 7 schools and Miami is my first choice. This could all change as I hear from more schools, but I would think that Miami would still be one of my top choices because of the scholarship. I am most likely heading down there for a three day weekend at the end of March to visit and look at areas to live. It's hard to believe that we could be moving that far away in August. Although, I think Miami is a highlight for friends that might want to come visit! I'll keep you updated:)

A weekend at home

(I posted two new blog posts over the weekend...go ahead and look at those and then come back to this story...go ahead...I will wait for you :)    ).

Saturday we spent the day lounging around our house.  It was a horribly rainy, windy, stormy day (so sad for those to the south of us who experienced such horrible weather).  So we stayed in our pj's.  We made a ginormous breakfast with pancakes, eggs, and sausage, and delicious coffee.  We put on some music.  We moved Luca from swing, to floor, to activity mat, to bouncer, to one lap, to the other's lap, and back around again.  We kept busy, giving her plenty of exercise.  We had a mini dance party...just the three of us. 

When we have her out of the hospital, it seems like she moves so quickly developmentally - like she had been bottling up all these new tricks and then releases each of them within a few days of coming home.  We become the parents who are obsessive about doing tummy time and different strength exercises (we meet with physical therapy to give us new ones for her) because we have to try to keep her up to date.  But she enjoys (almost) all of it.  [She hates tummy time.  Which is really fun because it is the one thing she needs the most work on.  Oh and also really fun when she wakes up on her belly because she rolled onto it while sleeping and then wakes up completely freaked out.  Queue the screaming.]

Sunday, the sun came out.  We opened up the windows and breathed in the fresh spring air.  I made oatmeal with sunflower seed butter and banana slices for breakfast.  I would have loved to have gone out for a big walk...but we had a home nurse coming between 2-4pm to help us hold Luca down for her dressing change (queue the screaming again please).  We once again turned on the music and played with Luca all day.  We eventually ventured out to our patio after Luca took a nap (following the screaming marathon for her dressing change).  We had a package of hot dogs in the refrigerator that needed to be used up.  Ian fired up the grill while I sliced a couple onions and put some delicious garlicky dressing on them.  We put a blanket on the patio and Luca's activity mat.  We set her up there and I sat quietly and just listened.  Our house backs up to a big building so our voices can echo a bit.  Luca thought hearing her voice so loudly was fun - and she repeatedly squeeled in delight.  She sat there, looking up at the sky, occasionally looking at each of us to smile, and talked for about 45 minutes. 

We quickly ate our dinner before we needed to head up to get L ready for bed.  We have to take her up at 7pm every night to do all of the medical chores before bed.  It was 6:55pm.  I looked at Ian and asked if he had cash.  He did.  He didn't need to ask why I wanted cash.  We quickly scooped Luca up, threw on our shoes and stepped outside.  We walked the familiar way down the block to our favorite summer spot.  It was the first visit of the season.  I really did not even care about eating the ice...I just wanted to do something carefree that I had thought about doing the entire time I was pregnant last summer.  And I do not have to worry about her being near people because it is outside.  And I do not even have to stand in line with other people as long as Ian is with me.  It was delightful.

I have lots of pictures from the weekend but our laptop shift key has permanently frozen making it impossible for me to do anything.  So you'll just have to imagine our weekend...it was quiet and beautiful all at once.  Looking forward to more of these times soon.

Siesta

Last night, we went to Butterfield 9 for DC's restaurant week. I love restaurant week as I think it's a very economical way to try out some higher priced restaurants. I got a salad to start, roasted chicken for the entree, and a pistachio pudding cake for dessert. The chicken and dessert were awesome! I think the regular menu food is overpriced - but for restaurant week is was yummy. Just a note - the food is very rich. Even my salad and chicken tasted rich.

Our reservation was at 7:30 and even though we got there before 7, they were so packed that we weren't seated until after 7:30. It made me realize that going into DC for a nice dinner makes for getting home later than I'd like to. We got home at around 10, but by the time you do all the "getting ready for bed" stuff (walking the dog, getting the mail, sorting the mail, read note from dogwalker, brush teeth, wash face, etc.), we didn't get to bed until 11:30 or 12. Then this morning, I got up at 5:45 because I had physical therapy at 7:15. Why I ever scheduled appointments that early, I don't know!

But my exhaustion got me to thinking - where did naptime go? I miss the days in college of going out until 2-3am, going to a 9 am class and classes throughout the day, then coming back for a nap and then going back out to start the whole process over again. It's amazing how quickly your body changes - my body was telling me this morning that if I want to get up at 5:45, I better be asleep by 9 - maybe 10 the night before.

The hubby-to-be (HTB) always talks about how his body can't handle drinking anymore. If he has more than a few beers, he'll be hurting the next day. I sometimes feel tired the next day if I have had more than one drink the night before.

Some might think it's our bodies way of telling us to slow down. But personally, I think the big difference is the naptime! I partied more in my four months in Spain than I did in any college year. It's not to say I didn't drink or party in college, but rather to say how crazy of a time Spain was. We probably went out on average, 6 nights per week. And in Spain, you party until about 3-4am. But your body could recover because of siesta time! Contrary to most thinking, siestas are not used by the Spaniards to take naps. They use this time to have their biggest meal of the day and spend time with the family. However, all the Americans used this time not in the traditional way, but rather to recover from our nights out drinking. As much as I'd like for siestas to become a practice in the US, I somehow think that if I want my siesta, I'm going to have to venture back to Espana.

Gross Pictures

WARNING: These are absolutely disgusting. So do not look if you can't handle the gross surgery shows. The doctor is very pleased with how it looks after 6 days and I was actually very surprised at how little bruising there is. He took 3 staples out today because they were bothering me and will take the rest of them out next Thursday. I'm in a more comfortable cast now that I can take off for showers and bathing - this makes my life 100 times easier! I can start putting weight on it in 1 week and will start therapy on it right after that. Wahoo - this is going to be a better recovery than expected!


No work for another week unless it's from home.

Okay here are the pictures.

This is a horrific picture of me right after they took the hard cast off of it - but I was thrilled that my leg felt so much lighter and free!!

And here are the nasty nasty make-me-want-to-vomit pictures:

7 Months

I wrote this post yesterday morning...but didn't get to finishing it up until now. 

Luca is 7 months old today!  How are we spending our day celebrating?  Oh we're back in the hospital.  Sigh.  She was in the hospital at 4 months, 5 months, 6 months.  I was hoping we'd be home on the day of her 7 month birthday.  But then I checked on her at midnight on Friday night and she felt hot.  After a thermometer check, she was indeed running a fever.  A fever for an immunosuppressed baby = not good.  A fever for a baby who has a PICC line in her arm = not good.  So off to the hospital we went at 2am.  She was admitted.  Luckily, her fever came down on its own by the time we'd gotten to the hospital.  And it has stayed down since then.

I really had hopes.  High hopes.  Better luck for 8 months, maybe? 

At 7 months old:

She loves sleeping on her left side.  We're so incredibly impressed that even though she's had massive stomach surgery (x3), she is only a little bit behind in milestones.  She mastered the art of rolling from back to front, but stops short of being on her belly because she hates it. 

She loves sticking out her tongue.  Like, 90% of the time she is awake, she is sticking her tongue out, blowing bubbles, and smiling all at once.  She must be figuring out how to use the thing.  And when we are close to her face and stick out our tongues, she immediately tries to grab them.  (Don't worry, we don't let her.)

She is becoming increasingly quick at reaching for things in her vicinity, even if we just bring something near her for a second.  Especially things that she should not be grabbing.  Like her g-tube extension, my hair, syringes, dog hair.  She even has mastered the art of taking off the arm restraint that goes on when she's hooked up to IVs.

She giggles regularly.  It used to be a once in awhile occurrence.  But the past couple weeks she has increasingly been finding that sweet, belly laugh.  And she still has a big gummy smile - as many times as we've thought she must be teething, we have yet to see the evidence.  Here is a sample of her giggling from about 10 days ago.

In terms of eating - her entire body convulses with every bite of food we try to feed her.  She surely developed an aversion to anything being in her mouth - from being ventilated, having her mouth brushed out with medicine twice per day, and being suctioned a lot in the hospital.  But we continue to torture her try with her.  Almost everyday we try some solids.  The whole bottle thing - she has totally refused.  So oral therapy said to skip it and move onto something she does not have any bad association with.  Hopefully, one day it will just click.  Although she is not interested in eating much, she loves watching Ian and I eat or drink.  She stares intently and licks her lips.

And most of all, Luca is happy.  She is incredibly happy.  It makes me smile in awe to think that through it all, she is one happy baby.  We hear over and over again at the hospital that she is such a pleasant little girl.  She really only cries if someone is not with her, or if she is ready to fall asleep. 

And mama and daddy have survived 7 months - and are even more madly in love with our little girl each day.

Work trip

Ian left today for 6 days for a work trip.  It is the first time he has had to leave for more than a night since Luca was born.  Honestly, leading up to the trip he was so anxious about leaving that I tried to ease his nerves by telling him how it was no big deal.  He was concerned about me and how much it would take out of me to do both of our jobs.  I kept reminding him that people do this all the time, that we should be grateful he has a job that does not require traveling, and that we are so lucky to have each other 99.9% of the time to do this parenting thing as a team.

The truth is that Ian does more than the typical dad.  I expect him to be more involved because there is just so much to do with Luca, and if I'm being honest, I am exhausted most of the time so I need his help.  When he gets home from work, he has a lot to help out with.  We have lots of therapy homework, meds to make, syringes to clean, paperwork to file, insurance docs to review, phone calls to various people in Luca's team.  These extra things add up and mean that cleaning is not a priority for me during the day so it ends up on Ian's plate after he gets home.  And now that I am back in school, it means he has to take on more.

And while I tried to assure him that this is no big deal, in the back of my head I knew this would be totally okay, but super overwhelming and exhausting.  Luckily, I've called in reinforcements to help out during the week.  I have said it a lot of times, but we seriously have the best parents.

Yes, I know I will get through the week just fine.  We are on day 1 and I was finally able to sit down at 10pm.  This mama is going to sleep well this week.  Hopefully Luca will cooperate with that plan.

Started off the week by cleaning the hell of our house, making a nice dinner, getting schoolwork done, going to church, and taking care of myself.  Don't be surprised if by the end of the week I announce that I haven't showered or brushed my teeth, the dog hasn't been walked in 48 hours, and the house is a disaster.  Here's to optimistic thinking though, right?

Happy Belated Thanksgiving!

Tuesday night Ian took me to Black Market for my birthday dinner and it was awesome! It's owned by the Black Restaurant Group who have amazing restaurants - you should def check them out! I highly recommend the mussels as an appetizer - yum!

Wednesday we woke up bright an early to head to Brookside Gardens to meet with our photographer. It was a beautiful day and the gardens are A-MAZING! We were really excited to see how he worked with us and he'll be giving us the cd of images on Monday.

Our Thanksgiving day was so great. Ian's parents came down to go with us to Maggie and Brian's house with our family. The food is always fantastic and their house is extremely homey - it feels so much like fall when you go there for Thanksgiving. I also have to mention that I made an appetizer that I had stolen the recipe from Bridget's bridal luncheon and it was a huge hit. Here's the recipe:

Stuffed Gouda Balls
1 8 oz can of crescent rolls
1 7 oz ball of gouda (or smoked gouda)

Separate the can of crescent rolls in half and make them into two squares. Cut the ball of gouda into 2 thin slices horizontally so that they are still round. Place one block of cheese onto each square of crescent rolls. Fold up the crescent roll around the gouda very tightly so that there are no gaps. Place the folded side down on a non-greased cookie sheet and bake for 10-12 minutes at 375 degrees until golden brown. Serve with jam on the side (such as chipotle-raspberry). DELICIOUS!

Last night was kind of a damper for me because I was so worried about surgery this morning. The surgeon had prescribed me a medicine to take before even coming to the hospital to try to calm me down. I took that - but it barely helped this morning! I started crying as soon as Ian and my Mom came back after I was in my gown and hooked up to the IV. This was a true test for Ian because I tend to be quite needy in these types of situations. But he was a rock - he was awesome and even kept his nervous jokes to a minimum. Although, my mom did inform me that as soon as they wheeled me off for the surgery they went into the waiting room and Ian was quite choked up - aww he's cute.

I woke up very quickly after surgery and was released from the hospital about 45 minutes after waking up. The surgery was only about 30 minutes - I love my surgeon! There was no tear - the tendon was just extremely weak and there was a ton of scar tissue. He cleaned it up and sewed the bad tendon to a healthy tendon to strengthen it. The awesome news about this is that I have less recovery time! So currently as I type, I am on the couch with blankets all around me, my foot (in a cast) is propped up on lots of pillows, and there are two tubes coming out of the cast that attach to 2 tubes that go into an ice cooler. The ice cooler has a motor on it that pumps the ice water through my cast. It keeps the swelling down, and since I've been home I have yet to take the pain medicine the doc prescribed. I'm obsessed with this machine!

I'm out of work for the next week until I see the doctor. I will find out then when I switch into a walking cast and then shortly after will start a short course of physical therapy. All in all, I am pleased at how smoothly things went today and thank you all for your thoughts and prayers!

Brutal honesty

I apologize in advance for the brutal honesty with which I am writing this post. 

I have been struggling for the last several months.  I thought that with the hospitalizations becoming more infrequent, and our life starting to become slightly more normal (whatever the hell that means), that things would start feeling more normal.

But the truth is, since we have had more time at home, we finally have the time to process what we have been through in the past 23 months.  It has been a long, hard, 23 months.

When Luca first got sick and throughout her transplant hospitalizations, we had so much support.  But then people go on with their lives (as they should) and we are left standing in this life that we barely recognize.  We try to remain positive and grateful (God knows we are).  But what do we do with the not so great parts of this life?  How do we handle these feelings of anger, bitterness, fear, jealousy?

Finances are stressful for us.  Without going into specifics, we have great insurance but still pay for a lot out of pocket.  We live in an expensive area.  We depend on our family to help us financially.  And I wish I could go back to school or get a job.  I feel so helpless.

Luca's future is unknown.  Everyone thinks that post-transplant everything is all better.  But in the back of my head there is always the fear that we will ultimately lose her.  Obviously we pray that she has a long, fulfilling life, but we have no idea when she will need to be transplanted.  And the fact is, the transplant community is small and so we see people die waiting for an organ, die from complications.  It is scary.  (PS - become an organ donor if you are not already!!)  We try not to dwell on it, but it is a worry no matter how much we try to avoid it.

And while I am not proud to admit this, I will because it is the truth.  I constantly feel envious of other people.  That other people are having more kids.  We want more kids - but unless we want to risk repeating this process with another child, we cannot have more kids naturally.  It absolutely kills me and my heart hurts because of it. 

That people are buying houses, cars, and do not have to worry how to pay for their big costco trip for diapers in the next two weeks. 

That other people can take breaks from their children without arranging for meds and training someone to take care of things.

That other women can work out regularly and do not look 4 months pregnant.  (Related - twice in the past 3 weeks I have been congratulated on being pregnant.  Double punch to my gut - one for the fact that we are not having anymore kids naturally, and two because I cannot get rid of this stinking belly).

That other people do not have the constant task of managing a medically fragile child.  I feel like I am a slave to everything to do with Luca.  Managing her appointments, therapy sessions, exercises, paperwork, insurance, medication refills, future.  It takes over my life and I feel like I have to fight to retain any part of me.

I love this child and will continue to fight for her.  But sometimes I just wish this fight did not take so much out of us.

My faults

I have many faults.  I am completely aware that I am not the easiest person to be friends with.  Conversations with friends often include the crap going on in my life with Luca.  My life is not all sunshine.  I do not always get around to sending thank you notes (although it is something I am working on).  People have done tremendous things for us since Luca was born.  I may not always show our gratefulness...but I would hope that people know just how very grateful we are.  I go long periods of time without keeping in touch.  I forget friends birthdays.  I have a list of weddings and babies that I need to send gifts for...and little by little I send them (when I can space out the spending a bit).  I always want to get together with friends, and care so deeply for them, but time slips away and then it has been months since I said we should get together. 

I am not perfect.  I have many faults.  But I go to bed at night knowing one thing...I am doing the best I can every.single.day.  There is a little innocent being who requires therapy, homework, many appointments, and love.  And she is my first priority.  There is a man in my life who through it all, is holding my hand.  He is my priority.  Our marriage is my priority.

I am doing my very best to find balance for everyone in my life.  So to my family, friends, acquaintances, blog friends, strangers - I care about you deeply, even when I fail to recognize what an amazing person you are when you deserve to be reminded.  Even when I forget your birthday.  Even when I do not send a gift when a gift is due.  Even when I go long periods of time without talking to you.  Even when I miss being at your shower, party, wedding, etc.  Even when it seems like I do not recognize all the wonderful things you have done or said.

Please know that I think about all of these things every day, even though you may not know it.  I think about how I can improve.  I am trying.