My Angel Isabella

This is for WHS Mommies too

2014-03-21T11:55:00.005-07:00

Found this video, "Dear Future Mum",
made for World Down Syndrome Awareness Day (March 21st) .

It's message hold's true for us too, the parents of individuals with Wolf Hirschhorn Syndrome,
most especially to the new mommies and the mommies to be of children with 4p minus.

I really hope this video finds you.

It will give you HOPE!

I somehow cannot find a way to embed the video onto my blog,

but the picture is linked to the video.
All you need to do is click it.

April 16th

2014-03-21T11:40:00.001-07:00

For all of you who want to be in the know, Wolf Hirschhorn Syndrome (WHS) is the

deletion of the p-arm of the 4th chromosome, WHS is also known as 4pminus (4p-).

Isabella may be lacking some genetic material,

but her real story, goes beyond what is dictated by science.

She may be a chromosome arm short, but she most definitely has an overabundance of AMAZING!

April 16th is now designated as a special day to create
Wolf Hirschhorn Syndrome awareness.

So now we have birthdays, milestone days, AND April 16th just to celebrate Isabella's AWESOMENESS!

My Daily Prayer

2014-03-04T15:16:00.001-08:00

I remember reading this prayer daily during the first two years since Isabella was diagnosed. This is what helped me take things a day at a time, because when things get too overwhelming, prayer was my comfort to help get me through the day.

In my daily praying, I have learned to let go and pass on some of the responsibility I felt to HIM. The burden is lightened in accepting that God is in charge and trusting that he is with you, and to take on all of it was intensely overwhelming and defeating. I have no control of what there is/was and there was comfort in knowing that I can “Cast your burden on the Lord . . . . (Isaiah 9:6).

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Lord God,

I am here today to praise and thank you for the challenges that you give me. I know that your plans for providing these trials goes beyond teaching me something… your plans include changing me into something, molding my character so that I may become a better version of myself yesterday.

Lord I praise and thank you for challenges that you have prepared for me daily. I trust that your plans are good, and that your will is always good. Lord I apologize for having finite understanding that sometimes I struggle in accepting things as they are. I apologize for missing out on the little blessings and miracles every day because I focus too much on what is not there. I am sorry that sometimes I overlook the good things and that I take things for granted. Remind me everyday Lord that there is always something to find that I can praise and thank you for. That there are things, no matter how small, that I can be grateful for. Teach me Lord to appreciate the things can sometimes be guised as challenges because good things are hiding behind these trials and that all that I need to do is to persevere and be patient.

Lord, I am also here today to lift up to you my fears, my apprehensions and my doubts… Lord I lift up to you all the concerns in my heart.

Lord I lift up to you my child. I wish for her to grow up happy and loving. Let her know and feel that she is loved because she is. Grant her health, and be with her in every seizure, surgery, doctor’s appointment, medical procedure, etc. Be with her in her daily tasks, most especially the ones that most people find simple to do, but takes a lot for her to accomplish. Guide her and hold her in your hands. Give her an indomitable spirit so she will keep trying her best and push herself beyond her limits or the dictates of her disability. As for me Lord, help me to just love her more whenever I find that days are challenging. Shower me with more love for her because there are definite moments that I need to feel more of that.

Lord I lift up to you my son. Give him compassion so that he may be able to process his own understanding of what it is like to be a part of a family with a child with special needs. Guide him through his own journey into understanding and acceptance. Grant him patience and the words to help him communicate and educate his peers. I wish that he grows up knowing that he is loved too and that he is never neglected nor forgotten whenever the focus is on his sister. Grant him more love for his sister and from us and may he grow up as his sister’s advocate and protector.

Lord I lift up to you my spouse. Make him understand my many complicated emotions. Help us connect and communicate that we may always find a middle ground or compromise for the tough decisions we have to make and for the resolution of conflicts that we will face. Grant us lord the gift of finding quality time for each other and be able to always reassure and comfort each other. Remind us Lord everyday of the love that we have for each other prior to having our children. That the love is still there though it may be hidden under a pile of chores, errands, and worries. Lord let us feel that love every now and then to give us a boost or a nudge when we most need it. Lord we pray that you help us keep our relationship strong because we will need each other for the many other trials ahead. Keep us together as we weather the storms.

Lord I lift up to you the people around me, that I can trust them to be understanding of my child, and that the people that work with her have genuine care for her. Grant the doctors, nurses, teachers, and the specialists that work with my child the knowledge and education that is necessary to help her reach her goals. I pray that they are as invested as we are in our child’s development. Grant them compassion for us too that sometimes daily life gets in the way and we may not be able to do all. Grant them patience, and resourcefulness and creativity and compassion as they work daily with my daughter. I pray for their health and bless them lord for helping us through this journey of raising my daughter.

Lord I also lift up to you myself. Grant me your grace so that I can keep on going. Help me to always find strength within. Take out the anger, the bitterness, the envy, the self pity, and the negativity in my heart. Take out the doubt and teach me to fully trust your will. Remind me everyday Lord that you will never give me something I cannot bear. Replace all these overwhelming emotions with feelings of joy and acceptance and contentment…. of feelings that evoke faith and hope. Nourish my spirit with wisdom and courage to help me to keep on going in the face of challenges. Grant me perseverance. Grant me peace of mind. Grant me a joyful heart.

Lord, for all the other things that I have forgotten to praise and thank you for, I say thank you. For all the things that I have no words to lift up to you, I offer to you. My heart is in your hands dear God. I offer it to you wholly. Hold it in the palm of your hand. Teach me God to be still in the midst of chaos and trust that that is exactly when your best work happens. Lord let me know that you are there all the time and that you will always, always carry me through because you are God.

All this I ask in your name.

Amen.

Wait, There's MORE!

2014-02-04T18:25:00.001-08:00

In terms of speech development, I have mentioned in a previous post that Isabella does sounds and recently she will nod her head for “Yes” and shake her head for “No” and I pretty much feel that the use of Yes and No has been consistent. She also seems to understand some "signs" we have done with her. But, in terms of a communication output, all we have are sounds.

However, in terms of conveying meaning, we are still lost, but like all other things “Isabella”, we believe that eventually "conveying meaning" will find it’s way somehow.

BUT… here’s the best highlight in terms of output, she finally is using the sign for “more”. See our little angel use sign in the video below.

Thank you Isabella for giving us a reason to appreciate "more" things, every single day.

About A Brother and a Sister

2013-12-28T23:34:00.000-08:00

Ever since Isabella was born, we have been raising our typical son (older sibling) conscientiously in terms of how he should treat her sister. We want him to treat her with compassion and yet not so much that Isabella can get away with a lot of things. We want to be fair to each of them and yet not overcompensate for whatever for either one. It's a tough tightrope balancing act sometimes and you have no idea whether you are doing it right or whether you are doing it enough. It's a mystery.

Sometimes I wonder about whether my two children will ever find a way to really play together, like siblings do... sometimes I fear that he will outgrow his sister and be estranged as they get older, but like all fears and what if's, there are no guarantees, and most of the time really, they are all just noisy mind junk .

These were quick and passing thoughts I had this week, and then while I was in the process of cleaning up photos and videos from our I-Pad, I found this.

As it has been proven over and over again, it looks like I really have nothing to worry about.

Reaching 4 The Stars

2013-12-17T17:12:00.002-08:00

Isay just turned 4.

I was just looking at her past photos and realized, not only how much time flew, but also how much things have changed. In spite of that forever feeling when waiting in between developmental milestones, 4 years passing seem to take us by surprise. Her face has changed so much, her activity has changed a lot, but her persevering spirit lingered on.

Here’s a quick journey of the first 4 years in Isabella’s life…

Year 0 to 1: This was an emotional year for the whole family. The diagnosis brought us for quite an emotional roller coaster ride of sorts, but we pulled through. This year, we had to deal with feeding issues and a lot of throwing up. We had to deal with having a child with a cleft palate. We went from having an NG tube to a G-tube (@ 4 months). The docs said she has brain fluid and brain cysts, she can’t hear, she has kidney problems, she has acid and kidney reflux, and a heart murmur. We had cleft palate surgery and 2 major seizure episodes. BUT in spite of all that, Isabella was able to learn how to hold her head up, and that one thing that came right on time, was her social smile. Early intervention services (Infant Specialist, Educ OT, Feeding OT, and PT) started when she was 3 months old.

Year 1 to 2: This year she started to eat more, but we still give her a bolus from time to time during the day. Her throw ups were erratic and almost nonexistent. Her kidney reflux resolved itself and her kidney function went up to 95%. A sedated ABR was done together with ear tube placement surgery. Her hearing issues were resolved, and as it turns out she can hear us. She started to make noises. We We dealt with 2 more major seizure episodes this year. BUT, in spite of all that, she learned how to sit with support, to without support, and managed to learn how to crawl.

Year 2 to 3: We found out that she has sleep issues and so another surgery to remove her tonsils and adenoids were done, and her 2nd set of ear tubes were placed at the same time. This year all her daytime feeds are by mouth, but she still requires an overnight feeding pump. We battled with insurance and the regional center and eventually we got a nurse to take care of her during the daytime. Her heart issues were resolved. We had one seizure episode but need not take a trip to the ER nor call 911. BUT, in spite of all that, Isabella learned how to pull herself up, and started cruising. She also figured out how to climb up the stairs and scoot her bottom to come down safely.

Year 3 to 4: This year, Isabella has been making more noises. She grunts, makes sounds, and squeals. She started school this year and seems to be really enjoying it there. She has shown signs of receptive language skills. She was weaned off one of her seizure meds (phenobarbital) and is only currently on Kepra, multivitamins, and nothing else. She is seizure free for a year. We are currently tipping the scales at 24lbs! We are also anticipating surgery to replace her ear tubes (again) soon, as well as an MRI just to follow up on her brain fluid and cysts. When literature said 50% of WHS cases may never learn how to walk, she went against those odds and has been walking and walking and walking everywhere!

With all that Isabella has achieved in the last 4 years, isn’t it only apropos to have a “Reaching 4 the Stars” themed birthday party?

We love you Isabella and we anticipate for you to grab more stars!

Is This A Sign?

2013-11-01T16:30:00.000-07:00

Like I have mentioned in previous posts, we know Isabella understands more than what she can express. However, it becomes a guessing game because with very limited expressive language output, it is an extra challenge to gauge her receptive language skills.

Her language repertoire includes the following:

She can nod for "yes", and can shake her head for "no" but she is inconsistent in using it, so we can't really tell for sure. She does like to say "no" a lot.

She does not point, but she will take your hand and lead you to where she wants to go or for you to do or get something she wants, e.g. takes your hand because the ipad picture slideshow of herself has stopped - she loves looking at pictures of herself.

She used to touch her forehead, her generic sign for "parent", but she also uses the same gesture/sign for "Hi"depending on the context.

She makes happy, whiny, angry sounds. Most with a closed mouth, but occasionally we get an open "ahhh". She's happy when she sees herself in the mirror, when we do a lot of movement with our hands, when we swing her, when we sing, when we dance, when we press play on the ipad so she can watch pictures of herself, etc. She makes angry sounds when her dad gets dressed because she doesn't want him to leave, or when I'm washing the dishes and cannot give her my full attention, etc.

When I talk to her she responds with a sound which indicates that she knows how to do the "back and forth" in terms of communication

Me: So what did you do in school today?

Isay: closed mouth "uh-uh"

Me: So you played with your friends?

Isay: closed mouth "uh-uh"

Me: Did you have fun?

Isay: closed mouth "uh-uh"

She has shown us that she has some vocabulary. Like when we ask her to get her book, even if we were pointing at the ball just to test her, she will look at the ball, but turn for the book and get it.

Since her expressive language is limited, we try to use sign language. Even to just model it for her, in the hope that eventually she will use her hands to talk to us. (I have to note that we are not signing because she is deaf or hard of hearing, we are modeling for her a way to use her hands for language so she can learn how to use it). When we do talk to her, we make sure that we say the word and do the sign, even if she does not do it with her hands. I have to admit though that we are not consistent in using it because it's always just easier to talk to her, and there was always the question about whether she makes a connection between the sign and the word, BUT that was a question unanswered until today.

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In this video, Isay had one foot with a shoe on and another one with a sock. First, I signed only "where" and "shoe". Then I signed "where" and "sock". There was a slight, what seems like a processing mistake, and then she corrected herself.

In this other video, I had Isabella's shoes beside her on the couch. I don't know if she even knew they were there, because she was busy trying to watch herself being video-ed. I asked by signing "where shoe" but I meant "give shoe". I was not correctly signing what I was asking for her to do. When I asked, you can see she did look down her foot and then she shook her head "no". I realized the miscommunication that happened there. She was trying to tell me "no shoe" when I asked "where shoe", and it is actually a correct response.

She is 3 years and 11 months on this post... that's how long we had to wait for a sign that she does know about things we have been trying to tell her, show her, teach her ... but it looks like the wait is not going to be that long anymore.

Happy Halloween

2013-10-31T23:30:00.000-07:00

Isabella, our cute little THING!

Always Camera Ready

2013-10-14T21:38:00.000-07:00

Do other WHS kids also love looking at themselves in the mirror, looking at their own photos, or having their pictures taken?

OR

Do I happen to just have the smiliest girl in the world?

Music and My Isabella

2013-10-14T21:32:00.001-07:00

They've mentioned in the WHS network that our kids love music... I believe for this to be true!

At 3 and a half, Isabella hardly stays put, but not when she has the best seat in the house!

Great STRIDES Within a Week!

2013-10-14T21:31:00.000-07:00

On my last developmental update I mentioned that Isabella has been walking. Well she has, but it was not really her first choice of movement/mobility around the house. Most of the time at home she would rather crawl or kneel walk, probably because her balance still needs work. She seems to feel more confident when we are close to her to guide her or for her to hold onto whenever she needs to regain her balance. She will take us for hand held walks around the house.

But just like any skill, she needs to practice walking over and over until she learns how to coordinate her balance with her body movements so she can move around with ease. Lately, (and this is a happily welcomed challenge) it is quite a challenge to keep her contained in the shopping cart, she would really rather take walks around the store, and her first go to person is not me or her dad, it is her brother.

Taking her brother for a stroll at Costco

However, this week she decided that she can do it all on her own! (please note that the picture and this video is a week apart and that it has been 5 months since the day she decided to walk across the living room)

This girl definitely wants to go!

And they said that less than 50% will ever be able to walk.
well... TAKE THAT MEDICAL SCIENCE!!!

Sharing our Special Story

2013-09-15T22:36:00.000-07:00

We jumped into this amazing opportunity to share our story on the web, and although having to write it was an emotional journey back in time, the present and future sure feels hopeful.

Read about us in the feature article entitled Special Needs, Special Love.

Isabella Eats

2013-09-09T10:15:00.003-07:00

Isabella has oral aversion... and due to that feeding is difficult, and she won't really explore her mouth or let others do it that oral motor skills are compromised. She does not chew, she does not suck, and the aftermath of a dentist visit (with the prying open, exploration, brushing, etc.) is a gateway to a temporary shut down of oral feeding willingness.

Daily feedings are tasking and brushing her teeth is no-party. Up until...

We saw that Isabella was very interested in her brother's battery toothbrush... those ones with a spinning brush head, make a sound, and has a vibrating sensation when you hold and use it. The nightly bath time routine is that the kids brush their teeth and bathe at the same time, and every time she watches her brother closely as he uses his toothbrush, giggles at the tickling vibrating sound she hears, and got so curious that she would grab it and put it in her mouth, and since they can't share toothbrushes (who would even want to do that really?), we got her her own spinning brush, a pink one with flowers... and "Lo and behold!"... she would welcome it with her mouth open whenever we brush her teeth, making tooth brushing feel less of a chore! =D

So, my husband, had one of his brilliant ideas... why not feed her with a vibrating spoon? So he went online, then the heavens opened up, and found one!

A week later it arrived in the mail... several uses later, feedings started becoming easier and the choirs of angels started singing, because now Isabella, will actually grab the spoon and put it willingly in her mouth!

So here's to hoping that the choir keeps singing!

The Third Year

2013-09-02T19:53:00.001-07:00

It has been a year since I last updated this blog and a lot of good changes have happened.

The stats: Isabella weighs 23.5 lbs and measures 32 inches. That's a gain of 2.5 lbs and 3 inches in a span of a year... while it may not sound enough of gain when compared to a typical child, it is a big reason to celebrate in the WHS community!

she loves the camera!

Feeding: All daytime feeds are via mouth, and her overnight feeding pump is at a rate of 75mls per hour for 7 hours. Although GI wants us to wean her off the pump, we feel that it is not yet time. She still does not feel hungry and to feed her on a schedule in the morning is still tasking. She is still volume sensitive, but throw ups are very scarce. She can handle lumpy food, but we are still mostly on Gerber stage 3s or pureed table food consistency. For the most part, our hesitation on weaning her off the pump is because of making sure she maintains her daily caloric intake. With her being more active, and what looks like her taking a step into the stubborn toddler stage (which i know we will be in for a while), making up for the calories via overnight pump was our way to go. It is a long discussion at the GI clinic, but there's a lot of flip flop between the pros and cons that the best way was to keep the feeding plan the way that it is.

Neuro: Her last seizure was a year and a half ago. The doctor ordered that she be weaned off pphenobarnital, and each time we taper off an ml per each month, we would see notable increase in drop seizures, but as her system normalizes, the drop seizures go away. She is now completely off of it and we do not see any drop or staring seizures. If for anything we see a notable improvement in her development. We still do 3 mls twice a day of the Keppra and do twice a day of the Clobazam. As for what can trigger her seizures, we know that fatigue is one of them. Crowds of people still overwhelm her that she will get tired easily, so when we do try to take her to big parties, we try not to stay for too long, or we take her to a corner or a place where there are less people from time to time so she can rest from the overstimulation.

Motor: She kneel walks and crawls around the house. Now that we moved to a one level home, she can navigate throughout the whole house like it was her very own kingdom. We also got her a Little Tykes slide for the backyard and she loves going there. She can walk. The ease and balance is still not perfect, but she IS walking. Every now and then we would see her just standing, and she can from time to time stop, make turns and continue on walking.

Language: Isabella is quite a character. She is a diva and she knows what she wants even when she can’t really say it in words. When we call her and she does not want to come, she will not look but she will be smiling and giggling. When we tell her its time for her bath she quickly crawls the other way. When we tell her its time for her nap, she does a fake cry sound with a drama-queen-cry-face. Lately, when we point at something to ask her to get it, she will get it. We see an improvement in her receptive language. In terms of her expressive repertoire, she will whine when she does not want something, make happy sounds when she enjoys something, and she will take your hand and lead you to where she wants to go. There was a time that she would touch her forehead, for what seems like her response to the sign “hi”, or a generic sign for mommy and daddy, but that went away. But, we know she understands ore than what she can express, so expressive language would just have to wait and it will be one of those sweet surprises from her in the future.

School: She attends a special moderate to severe preschool setting. She gets OT and speech weekly through the school (on top of the PT and feeding OT she gets at home weekly via our insurance). A bus picks her up and drops her off at home. A communication notebook is used so we know how her day went and we write anything we want to tell the teacher. Since school started, she gets bored easily at home. She looks for something to do, or some form of stimulation for her that watching "The Wiggles", herself in the mirror, or a slide show of her pictures are no longer enough. She wants to be tickled and cuddled and sang to. She craves interaction, she loves looking at books, and picking up things and dropping them on the floor, she loves being around children, and she is quite fond of babies.

What’s good on the third year: There are less doctor’s appointments to keep up with, less medication to remember to administer and refill. We still are closely followed by the Neurology, GI and Renal Clinics with appointments every 3 to 6 months, while the Craniofacial, Audiology, and Opthalmology Clinics only need to see us once a year. Less stress and less issues. I am in a better place emotionally, although the last time I fell off the wagon was when I saw a group of highschool girls getting ready for the prom and it broke my heart that my girl won’t be able to go to one, but it was eventually dismissed, as we made prom prearrangements by having my son be my daughter’s date. So that settled the temporary loss of perspective. Otherwise, for the most part, things are definitely looking up.

I noticed in her recent photos, that Isay no longer looks like a baby... she is now nanay's little girl.

Isabella: Summer 2012 Update

2012-07-29T15:36:00.000-07:00

Here is a long overdue update on how my little Isabella has been doing….

The Stats:

In May 2012 Isabella weighed in at 21 lbs and 29 inches. No wonder our backs were already hurting, she got so heavy, she slips down from my arms from all that weight.

However, sometime in June 2012, a weight check in one of her appointments revealed that her weight went down to 19 lbs, BUT, what she lost in weight she gained in length (30 inches).

That’s why she can see what was on the other side of the booth

Renal and GI:

We went to see her Renal doctor in June and the labwork reveals that her kindeys are NORMAL. But, before our appointments are cut down to being once a year (instead of every 6 months) they decided to change her diet to a non restrictive one (which meant she can now eat anything and I do not need to read labels) and do final lab tests to see how her kidneys handle it. In coordination with the GI clinic they also decided to wean her off the formula and give her only all Boost Kid Essentials (1.0) for her overnight feeds.

Blood drawn shows good creatinine levels, which indicates that she has rock star kidneys. But renal says that they need a urine lab check to get a more complete picture of how her kidneys are doing. So as much as we tried getting this done before she goes to surgery, our attempts at collecting urine failed 3 times (I never thought that it is super challenging to collect urine from a girl baby). So, while she was at the hospital (post surgery)we let the nurses do it. We have yet to see the results, but I have a strong feeling that her kidneys will be fine… this would then translate to seeing the renal doctor just once a year so I’m keeping my fingers and legs crossed.

Feeding:

I got crazy using the puree-er and used it to puree table food (pasta, stew, meatloaf and potatoes, etc.) Basically anything we ate, she now ate too. Turns out, Isabella loves avocados and bananas (which she used to not eat because of the high potassium content). Daytime feeds became really fun (more fun for me with my new found kitchen tool) and she was taking in and keeping down food really well. The success in feeds brought her weight back up to 21 lbs in July 2012. Throw ups were non existent, and daytime feeds are all via mouth. We still do the continuous feedings at night, but now she takes it a rate of 50 mls/hour. This will make her feeding OT and GI doctor really happy.

With the diet change, she has been eating more, and gaining weight! But, we needed to deal with the occasional constipation that we have managed according to certain constipation alert levels. Click here for that blog post.

Isay with her"chunky" legs

Neuro:

Isabella had 2 seizures in the past that we think might be induced by chlorine exposure. So in May 2012 we decided to do an experiment and we went swimming. As it turns out, she did well in the pool and we’ve taken her swimming again since then …. so that chlorine induced seizure myth is busted.

Us swimming with the baby... I mean, toddler.

We do note seeing drop seizures. Neuro asked if they were “new” but we said we never really saw her "drop" before as she was not really up and mobile before. Now that she crawls, kneel walks, climbs and cruises around at home, we’ve seen it more often. So he recommended another seizure medication, Clobazam, and also decided to increase the Kepra, and wean her off the Phenobarbital. During the first week of giving her the new medication she was lethargic, and after that she went back to her usual self. No more drop seizures noted since then, so the new seizure med cocktail is actually working.

Isay and Nanay walking at the beach

Sleep Study , EENT, Audiology, and Surgery:

A sleep study was done in April and it revealed that Isabella has obstructive sleep apnea. So an order for surgery was done to remove her adenoids and tonsils, which we are hoping would be her last surgery. Also, since, she will go under anesthesia, we requested that another sedated ABR be done to finally get a conclusive answer regarding her hearing issues. After moving surgery dates several times, we finally got it done on July 27^th. Giving us a week to squeeze in a short family getaway in Tahoe before we face the work that recovery from surgery entails (and also enough time to care for her post op before the new school year begins and we need to be back at work).

ABR revealed that she has NORMAL hearing. When we asked questions about seeing an audiologist for our follow up appointments, the doctor said we don’t need to do it every 3 months. So we wondered about all the cyclic-audiologist-appointments that we diligently kept (and missed work for) in the past 2 years, when her very first ABR (done when she was 4 months old) revealed the same normal result. Doctor said that with her disability, the behavioral audiology tests were not developmentally appropriate for her, and even if she cannot prove through those tests that she can hear, testing needed to be done. It almost sounded like it was a waste of our time since she can hear perfectly well during all those times that she was failing the tests that were not developmentally appropriate for her to begin with, but, nonetheless, hearing the word "normal" in anything about Isabella, is music to our ears. Doctor says that from now on, we would now only need to see an audiologist every 6 months, not necessarily to check for hearing, but to check for obstruction, i.e. fluid in ears or cerumen so that an EENT referral could be made to check ear tubes or clean her ears. We decided to go to a different audiologist for this.

Well we know she can hear us…. maybe not so much when she was younger because she does not wake up or get startled by loud sounds (and believe me, we tried banging pots and pans while she was asleep and she stayed soundly asleep), but now we know she does because we can hardly sneak in the room without her hearing our tiny catlike footsteps, and we can no longer take her to the movie theater even if we time it perfectly with her naptime schedule because the surround sound wakes her up. The question though was not so much if she can hear, but how much she can hear, so with this normal ABR result, her hearing issues have been resolved. She can hear everything perfectly fine!

As for recovering from surgery, well except for pouty lips (like that of Angelina Jolie’s), and the excessive drooling (like that of Angelina Jolie's onlookers) from not wanting to swallow, she recovered well. The most important part was that there were no seizures post op. Yay!

While recovering, we noticed an increase in oral aversion, and oral feeding was a futile attempt. The only thing we can seem to give her orally was vanilla ice cream, which she occasionally manages to swallow, and which is the only thing that has a high swallow success rate. So mommy’s pureeing frenzy would have to be put on hold and we would need to be satisfied with bolus feedings during the daytime (it is in times like these that we are thankful she has a G-tube… that and during periods of long drives). Also we noticed that her cry is louder, most likely with the increase in square footage inside her mouth that amplifies the sound…. and most most most likely because it was time for her next dose of pain medication (duh?!?)

Sleep Study and After Tonsilectomy and Adenoidectomy Surgery

Cardio:

Prior to surgery, a referral to cardio was made. We were anxious to know if the PFO and PDA holes in her heart have been resolved. The other doctors hear a murmur when they listen to her heart and so we were anxious to hear what the cardio has to say.

After an echo and a sonogram of heart was done, it revealed that her heart was normal and NO HOLES WERE NOTED. The murmur is still there, but what she has is called a Still’s murmur (because it is "still" there, hahaha!), which actually a benign type of murmur that we should not be really concerned about. Two thumbs up for Isabella’s heart!

Speech and Communication:

I noted in a previous blog update that Isabella shakes her head to tell us “no”…. she has not done this for a while. We also noticed that the head shaking that she does is more of a stimming activity and not really a “no”. Well that “head-shaking-stimming”, if it indeed was that, has stopped too. So, I don't really know what to say about that. It's confusing.

As much as I want to have something really significant to report in the area of speech/communication, I have yet to wait for signals from her. She does not reach or point or gesture for anything, just yet. But I do know, that there is this desire in her to tell us something, it’s just a matter of finding and teaching her a way to know how. Her sounds are mostly “Mmmmms”, and an occasional “Ahhhhh” to communicate displeasure or delight. She cries, but not so much… she is a pretty quiet laid back baby (toddler?). Although, just recently, she does this “fake cry”, perhaps in protest for when our world does not revolve around her. (See related blog post here)

I have noticed frustration though, so we started using sign language and have told the nurses taking care of her and the rest of the family swear (via a blood compact) to use consistently. One time when she seemed restless and was making sounds that seem to communicate that she is somewhat not happy and needs to be entertained, we signed a wiggling W to ask her if she wanted to watch the Wiggles (which is her favorite show), and the sound she was making stopped, which indicated that she understood. Other than that, I have yet to see a real communication “output” from her.

Although…. there were these two instances that she seemed to communicate something. Click here for that blog post.

Motor Development:

After drop seizures have been more controlled, we noticed an increase in her getting around the house. We would find her by our feet, in the kitchen, while we are washing dishes in the sink. We would find her halfway up the stairs, perhaps going after her brother, who just went upstairs. And one time we thought we lost her only to find her in the big bin by the TV getting into her basket of toys. Looks like it IS time to set up the gate and baby proof the house.

The therapist got her this really cute Pepto-Bismol-pink seizure helmet with a rainbow stripe strap that looks really cute on her. She looks like a little pink helmeted wrestler or boxer in training. She still needs to get used to wearing it though. The therapist is also trying to have her work on using a walker. Check out this video.

With some help, she has also managed on several occasions to take 2 to 3 wobbly steps on her own as seen on this other video.

Other Things to Celebrate:

* Because she thinks she already is a big girl, Isabella has cut down her daytime naps. Every now and then she manages two 30-minute to 1-hour naps, but mostly she only does one in the afternoon. Every now and then she also tries to convince herself that she is not sleeping even if she actually is.

Isay's not really sleeping, she's merely sitting.

* Isabella is set to start preschool in January 2013. So when we had our IFSP in July, it was almost hard to believe that the specialists have worked with our daughter for almost 3 years, and I thank them immensely for everything that they did to help our daughter. She has come really far. Our next step is to see the classes sometime in early September so we will be ready for our transition meeting (IFSP to IEP).

* PSA found another nurse, so now we have consistent full work week care for Isabella. YAY!

So that’s it for the Summer of 2012…. As for me, with the cyclical anxiety that I have to go through

-Ughhh, another appointment and another appointment and yet another appointment.

- Is she getting enough oxygen while sleeping?

- Will she have seizures after swimming?

- Does she still have holes in her heart?

- Why did she lose weight?

- Will she have seizures post op?

- What degree of hearing loss does she have?

I realized that it ALL turns out fine and all the anxiousness was a waste of time (I have to keep remembering that).

- There will still be appointments but there are less to keep up with.

- No seizures post swimming nor post op.

- What she lost in weight she gained in height.

- There are no more holes in her heart and the murmur is benign.

- She is not getting enough oxygen but after surgery she will, etc.

- She most DEFINITELY can hear.

With my expectations kept at a realistic level and with her always happy, there is really NOTHING to worry about!

LIFE IS GOOD.

For the previous developmental update, click here.

Ah-uh Yes and Ah-uh No

2012-07-29T15:01:00.003-07:00

Isabella has not showed us any communicative output really. She makes sounds, but they are usually Mmms, and Ahhhs, and the Ah-uhs that, depending on the context, can mean anything random. However, with the occasional change in tone in how she says it, it seems that sometimes she means Ah-uh as a "Yes", and other times Ah-uh means "No".

Here are 2 instances…

Instance #1: After rolling in her crib and crying for about 20 minutes, I realized that she will not go down for her nap, so I went to go get her and asked her “Why didn’t you sleep?” and she said “Ah-uh”, in such a diva-nated tone that tells us “Ah-uh, I don’t want to.”

Instrance #2: We were in the car and it started to smell like something died. So I asked my husband if he farted and he defensively said No. I asked my son if he farted and I got another defensive No. Since I was asking and was 100% sure that it wasn’t me, I asked Isabella if she farted, and she answers, “Ah-uh”… like “Ah-uh, I sure did”.

Apparently, It’s All About Her

2012-07-29T14:58:00.000-07:00

Isabella has developed this newfound assertiveness, which is actually a euphemism for stubbornness (hahaha!). She is curious (another euphemism for nosy), and loves getting into everything that we are into. She loves interacting with her brother (more of bothering him actually) and she will block and grab whatever he is getting into, which makes my son upset.

Isabella wants everyone’s attention, and she has her menacing ways to remind us often that the world revolves around her. (Yes, this also includes the dog as she would lean on Missy like it was her personal warmed up couch when the dog finds a cozy corner to lay in).

She wants to be on your lap while watching TV, she crawls on top of you when you manage to find 5 minutes of quiet rest on the floor mat, and she will smack your face with her hand (doesn’t hurt, but she will keep on bothering you) when she finds you with your eyes closed when you barely laid down, like she's trying to say "How dare you get 5 minutes of shut eye!", That or she tosses her shoe on your face (which hurts sometimes).

This is Isabella's way of telling her brother that it is HER turn to use the laptop.

(WARNING: Don’t be fooled by that smile on her face)

Here are other examples…

Example 1: She cries for attention.
Oh she cries when she wants us to just pay attention to her, it is this fake loud cry with no tears (that I suspect will be more amplified since her last surgery). She cries when she sees us getting dressed up, thinking that we are leaving her. She cries when we leave the room to go to the kitchen to make her food, she cries, and her plea for attention is most definitely heard.

Example 2: She loves herself.

She likes looking at herself in the mirror or looking at pictures of herself on the computer. She also likes watching a slide show of her pictures, and the moment the slide show stops, she cries to tell us that she wants more.

Example 3: She messes up my chore schedule.

Isabella wants me to just focus on her when I need to do something else. Whenever I fold the laundry, what normally will take me only 15 minutes to complete, takes me a whole hour. I would have to resort to playing endless rounds of peek-a-boo, and make it feel like something exciting each time, needing to do it for each piece of clothing I need to fold, because otherwise she will sit on top of whatever it is I'm trying to fold, or she will mess up the stack of neatly folded clothes, or get into the laundry basket and take all the clothes out and sprawl them all across the floor, getting dog hair all over it.

Example 4: She will judge you.
When I take a shower, she will crawl her way to the bathroom and sit in front of the glass shower door and just sit there watching you…. judging you.. making sounds, that make you feel uncomfortable having a baby look at you naked and making comments that you do not understand that you step out all soapy and semi rinsed. I swear, the moment I wrap my naked body with the towel, the “comments” stop.

Example 5: Your time is HER time.
When I lock myself in the commode, she will crawl and bang on the door with her shoe trying to tell you to hurry up with whatever sit down business your attending to. Almost like she's telling me that anything else that I do is less important than the privilege of paying attention to her. If I open the door so I can pretend to watch her, she will climb up and would want to sit on my lap, while I’m doing my “deposit”…. which leaves me doing my business in installments.

Example 6: She is better than her brother.
We will sit and chit-chat with her brother or have a silly wrestling tickle match on the floor and she will be there, putting her tiny body in the middle of it. She will yell, watch you with a stink eye, make those judgmental sound comments, fake cry, or toss her shoe. She will do anything in her power to put a stop to all the brother related fuss so we can all just focus on her.

Example 7: She torments her brother.
She will take apart the Lego sculpture he spent all morning building, she will sit on top of whatever he is reading, topple over the bin of little toys he is playing with that we would have to tell HIM to clean up, and she likes pulling his hair, and HE will cry. Not a fake cry, rather a full-of-tears-he-is-hurt-cry or a my-sister-is-so-annoying-and-he-is-so-frustrated kind of cry. While Isabella, god bless her menacing heart, would give him a smile when he looks at her with tears in his eyes, or when we look at her and ask her what she’s up to.

We have put Isabella on time out for not having “gentle hands” (pulling brother’s hair), and after three days of time outs, she seems to get the picture that she cannot pull her brother’s hair if she wants his attention, which she seems to want a lot of.

Not to say, of course that she does not cry when brother does something, she cries when her brother changes the channel (while she’s watching the Wiggles, so he can watch his 7 year old boy TV shows), and he proceeds to watch while she proceeds to cry and crawl to grab away the remote from him, which she is usually not successful in doing, because it is HIS turn on the TV.

While we are enjoying this exchange in torment between brother and sister, (which is a typical sibling thing in any household), and her tormenting us, (which is typical in any home with a toddler), we also enjoy that she has turned into this little diva, making everything all about her. =D

Okay Baby Girl the rest of this year you can make it all about you,

then come 2013 we’re gonna have to work on tapering it off a little.

Poop Happens

2012-07-29T14:51:00.001-07:00

Isabella poops two to three times daily. With two being the minimum quota and three being having extra marginal profit, and the occasional four being a reason to celebrate the extra commission.

The ideal poop consistency is that of peanut butter (if you are eating, and you decide to stop reading this, I won’t be offended, promise.)

With the diet change, ordered by GI and Renal to a non-restrictive diet, we were faced with dealing with the occasional constipation that we have managed according to its constipation alert levels that is signified by certain poop consistencies.

Level 1 Alert:
Level 1 Constipation Alert means different things. When Isabella has not gone in the morning like she usually does, or when she does go but they are like small pellets and are dry (like that of a rabbit or a goat), or if she gives us a donut hole (like a piece of a chocolate donut hole from Winchell's), or if she produces what we call Play Doh- a pasty kinda flat piece of brown doughy poop, this is called a Level 1 Constipation Alert. This level of constipation is usually managed by giving her some prune juice. While usually a successful means to make her go by lunchtime, every now and then, we do need to proceed with a plan to remediate a …

Level 2 Alert:
After being prune juice-boarded, and still not going by 4 pm, a Level 2 Constipation Alert will be in place. At this level, we will have to give her a dose of this minty-flavored-chalky-substance called Milk of Magnesia. At this point, because level 1 remedies did not work, and she has already skipped about 2 bowel outputs, we will need to deal with diaper overflows, poop went throughs, and sometimes, just sometimes, the all the way to the back poop cleaning.

It is important to note though that this level of intervention usually works and would not necessitate the need of a Level 3, but sometimes, rarely really, we do need to up the ante to a…

Level 3 Alert:
It is already day 2 with the constipation battle. For the first half of day 2 we will try a Level 1 approach, and and if she still has not gone, a Level 2 approach will be administered in the afternoon, and if that does not work, by bedtime (after already doing her daily bedtime ritual of a bath, brushing her teeth, taking her meds, and being dressed in her pretty jammies, and no luck with the production of her precious poop) then suppository Baby Pedia Lax will be necessary. Pedia Lax is really our last resort, and we are usually hesitant to give her this, so we would try and give her some belly massage and wait it out. But since she gets really restless and cranky when she has not gone (and I can’t blame her, for I will feel the same if I’m all plugged up.) then Pedia lax seems to be the only way to go.

Usually, due to our hesitation to give it at the right moment (which is always the time frame before we did it plus the time we wasted on waiting after we give her the belly massage), she would go in her sleep and we will have to deal with all the all the plugged-sordid-mess-of-bowels in the middle of the night. So lesson learned, when faced with a high level of constipation alert, DO NOT hesitate to give Pedia-lax by the afternoon of Day 2 Level 3 Constipation alert if we do not want to deal with giving the baby another bath in the middle of the night, and the need to address the dirty bedding laundry, ASAP.

Peek-a- BRO!

2012-04-07T15:58:00.000-07:00

28 Month Update

2012-04-07T15:06:00.001-07:00

* At 28 months, Isay now weighs about 20 lbs. and I finally put away all of her 6 to 9 month clothes. YAY! Hello 12 months!

* There seems to be a slowing down on her weight gain, yes in spite of all the cream and butter we've added to her diet. It could be because she has been more physically active, and thus, burning more calories.

*She is usually standing now, leaning on the couch, and when she sits, we rarely find her doing the "W" sitting. She can also manage to "kneel walk", often climbs on the stairs to go and check herself out in the big mirror by the stair landing. She also crawls all over the house and gets into our bins and takes stuff out to make a mess (Yay!). Also, every now and then, we will find her standing without support for a brief 3 to 5 seconds, and she slowly bends her knees to get to the floor. WOW!

* One time I left her on the rug by the foot of the bed so I can go get some diapers. When I got back after no less than 30 seconds, she was on top of the bed. I was bewildered and really thought that I could have left her on the bed, blaming it on my faltering memory, only to actually witness that night, when I left her on the rug again and turned my body to go get her box of wipes, that she pulled herself up to get on top of the bed, using the doggie mattress beside the bed to help give her some height... it's really time to baby proof the house!!! And yes, this is why she is burning more calories!

* We will be changing her feed routine. We will start off her nightly pump feeds at 10pm and end it at 6am at a rate of 40 mls per hour. We changed her daytime feeding schedule to 9am, 12noon, 3pm and 6pm. She takes in all her daytime feeds by mouth, eating about 120 to 150 mls of pureed table food with rice cereal or Gerber 2's or 3's each meal time (if her food is sweet we add about 50 mls of heavy cream and if it's salty we add about a tsp of butter). This way she takes in more volume and more calories. We hope this helps her gain the weight she needs.

* We got orthotic inserts for her shoes to help support her arch. She cruises less when she has these on, but when really motivated, she can do it. Check out the video of her cruising WITH EASE (sans the shoes).

Soon... she'd be WALKING soon! =D

To read about her last development update click here

My Little Noisemaker

2012-04-07T14:52:00.001-07:00

We just had ear tube placement surgery (her third set of ear tubes). It was an outpatient procedure and there were no complications. She recovered really well.

When her brother got home from school that afternoon, she turned to him for the first time when she HEARD him call her name. My son was really happy to know that she heard him and gave him many head kisses.

Also each morning while very one gets ready to leave for work/school, I see her trying to peek, from her crib, through the door that leads to the bathroom. She usually makes this whiny sound, maybe because she is calling for us, and she knows that one of us is in there. Every morning I see her do this and sometimes I call for her, while I make the bed to let her know that I'm in the room but she does not turn. The morning after surgery, however, when she HEARD the rustling of the blankets while I was making the bed, she turned, stopped the whiny sounds she was making, and gave me a big smile. I wanted to tell her I've been there all along, every morning, but I was too busy crying happy tears, cause she knew somebody was there when she turned at the sound of the blankets. =D

Here is a video of her having happy back and forth vocalizations with me. YAY!

There is still the question on whether she has hearing loss. Her audiology tests are very inconsistent as it sometimes shows that her better ear is her left, but that recently it shows that it's her right. At the last hearing test, she had an ear infection on her left and some drainage, so they weren't able to test that ear, but her right shows a mild hearing loss, which may be conductive, cause she did pass the ABR test done when she was 4 months old. The audiologist is talking about having another ABR done to rule out the possibility of a progressive hearing loss and another hearing test when her left ear gets better. We'll just have to wait and see. Behaviorally, the deaf and hard of hearing specialist working with her says, she seems to hear us. At this point I just want to know what direction to take so we can move on to the next step and really start working on those language skills. We barely started using signs like "more" and "all done" with her. She does not use gestures (yet), does not wave bye-bye or point to things, but sometimes does a head shake to signify a "No", but we use the signs just to start something. We really need to work on her receptive language skills and it would really help if she can hear us wouldn't it? =D

27 Month Update

2012-04-07T14:09:00.000-07:00

* Towards the end of January, we tried adding heavy cream and butter to Isabella's diet. This lead to a significant weight gain of a pound in a span of a month. If you look back into her history, you'd see that this is a definite weight milestone for her. At 27 months, she weighs in at 19lbs!

* She had a seizure at home. The first seizure we ever managed with the emergency meds (Diastat) and didn't need to call 911. She spiked a 102 fever right after and slept for a long time (3 hours). When she awoke, we were back to or regular programming. No milestones seem to have been affected.

* Seizure may have been caused by an ear infection we didn't know she even had. Another ear tube placement surgery is underway.

* We have a "stair climber"... and I don't mean that in an exercise equipment sort of way. Check out the video! =D

To read about her previous development update, click here.

Which Celebrity Hairstyle....

2012-01-30T20:48:00.000-08:00

Which celebrity hairstyle is Isabella trying to emulate?

Ashley Greene?

Donald Trump?

Wolverine?

Jack Nicholson?

Krusty the Clown?

TAKE A VOTE!!!

The Second Year

2011-12-12T13:18:00.000-08:00

Person: So how’s your daughter?

Me: Oh she'll be turning 2 this Friday.

Person: Oh, is she running and climbing around the house and getting into things?

Me: pause...

Me Thinking: mental picture of a typical 2 year old versus my mental picture of Isabella

Pause again….

Response: No....

I have not really entertained Isabella’s chronological age for a long time. It just helps not thinking about where she is at and where she should be and to see that big difference in between. I have trained myself to focus on the things that she can do rather than obsessing on developmental checklists. I’d much rather get lost in the numbers, but on this particular moment, after this conversation, the numbers caught up on me… like a slap in the face.

I realized that my daughter is not really even a year old.

…

It’s been days since Isabella had her second birthday and I do owe this blog a post about that year that has passed. I’ve contemplated against writing something sad about her second year... but eventually I gave in... thus this blog post that I’ve procrastinated on writing.

Truth be told... it was painful for me to celebrate her second birthday.

I know, I know... there were significant developmental strides, and yes those were JOYS added to our list, but in between those strides are the long arduous wait times to see what she achieves next... and quite frankly, sometimes I feel that the wait takes its toll on me rubbing off the novelty of what she has achieved the latest.

Maybe its because they are too little to even describe or tell as a story.... mostly I think its me and my bitterness.

Yes, I still feel bitter from time to time, and with her second year, I felt it big time.

YES, she can sit and pull herself to stand, BUT all her younger counterparts are either walking, running, climbing, jumping, getting into things, making a mess around the house. While some who are even way younger already balancing while bearing weight on their legs.

YES, she's discovered toys and picks up things and shakes them like a rattle, BUT her way younger counterparts have moved past beyond the joys of rattling a toy and moved on to the musical light up ones. Even better, others have regular playmates and scheduled play-dates.

YES, she always has a ready smile for us. BUT I have yet to see a response that signifies a head shaking to tell No, or a nod, or a clap, a gesture to give something, a goodbye wave... or to just hear her call me "mama". Will she ever call me mama?

….

When she turned one, technically, her delays were not yet that far apart. I will often find myself looking out into the unknown future armed with hope... now at two and not even reaching the one year mark, what do I arm myself with as I look out into that big, and what seems really long, unknown future? Somewhere there my positive thinking was like a drug that gave me mood swings of denial.

But, I know that I cannot give up hope completely… because really, that’s all I really have. So, I just look out without those false glorified visions nor expectations.... Just a small stare out into the open with a soft pursed smile on my lips, because it hurts too much to hope too big.

I think there is this fine line between too much hoping and expecting and practically begging for something great to happen. Like I said, hoping too much was clouding my perception of reality.

....

We celebrated her day by going to the bowling alley, with the theme of "for all the developmental milestones she worked so hard on hitting one bowling pin at a time" kept in my mind... and yet I found myself silently grieving on her birthday while I bowled till my right arm hurt. It was frustrating to keep trying for a strike, or even just a spare instead of the frequent scattered pins or getting that dreaded gutter ball.

As apropos as bowling seemed as a way to celebrate her special day, I guess I need to get better at accepting that sometimes its not how the balls are thrown, not those carefully planned angles, nor the strength of your throw, nor the speed of release, nor the weight of the ball, nor the careful placement of the fingers, nor the strategic twist of the wrist, nor the graceful forward step and follow through.

Perhaps that’s just how the pins are supposed to stand, and I should get better at thinking and feeling that that's okay.

Because it will.

Because it is.

That, or, I’m just a really terrible bowler.

...

Now, I look at her, and I say “Kiss Nanay” and she readily leans forward for her cheek to touch my lips... and she smiles at that moment of contact like that's the best thing ever... I just hope my heart catches up to that big silly grin on her beautiful face.

We Are Not in Kansas Anymore

2011-12-02T11:27:00.000-08:00

You know you are not in Kansas anymore when you know how to use the reminder and calendar function on your phone even with your eyes closed because you’ve developed a system to organize doctor’s appointments into manageable chunks that fit into your schedule.

You know you are not in Kansas anymore when you find feeding bags in your garbage can as much as you find diapers… and in your mind, you know that it’s going to be like that for a long time, so you worry about carbon foot prints and the situation of the landfills.

You know you are not in Kansas anymore when changing the Mickey button feels just like inserting an earring into a hole, and you don’t get squeamish about it at all…. Not even one bit.

You know you are not in Kansas anymore when you have fallen deaf to inappropriate comments and blind to unwelcome stares… and you become more aware of this fact when you’ve learned to be bothered less by these things and you feel proud at what you have become…. and it almost also feels like you have a secret… you perceive things differently and see nothing but beautiful on every square micro-inch of your baby’s face... something that the stare-ers and whisperers are blind to.

You know you are not in Kansas anymore when you disinfect more than you usually did because you don’t want your child to get sick because a spiking fever leads to a whole set of more complicated issues so you try your best to nip the spread of germs as early as you can.

You are not in Kansas anymore when you are always curious about your daughter’s weight, have an obsession for ounces taken in during feeds; and nap times and medication schedules are followed diligently like it’s a religion. You’ve also learned how to really read labels to look at protein and potassium content because you just cannot afford having your child develop kidney mishaps.

You know you are not in Kansas anymore when you have medications, formula, and feeding bags and other medical paraphernalia delivered at your doorstep each month, and your son gets excited with anticipation on opening these packages because he wants to know if his guess is right (are these meds, feeding bags, or milk?)… I think though, that for him, it feels like Christmas every month.

You know you are not in Kansas anymore, when questions such as how’s the baby doing does not bother you anymore, nor do comments such as, “Oh they grow up so fast.” Because you know your baby doesn’t… and it’s okay, and I really really mean it when I say that.

You are not in Kansas anymore when you find yourself getting excited about friends and family having new babies because your child can have a playmate and you get better and better each time at accepting that that same child who once was a playmate will surpass your child in development moving on to other playmates... because you know that more new babies will come to play with yours. You know that surely your little one will not be little forever, they just take longer to grow, and that’s is okay, because you know that they will and that they do.

You know you are not in Kansas anymore when you have baby clothes of the same size for all four seasons that are mostly used clothes from other parents whose babies were born way after yours… and it’s okay because really the clothes are gently used and hardly worn and, most importantly, you don’t need to buy them anymore.

You know you are not in Kansas anymore when you try not to plan family vacations way ahead of time because you don’t know if something will come up…. And things actually become more exciting as your family trips are more spontaneous.

You know you are not in Kansas anymore when you realized that you have evolved into this morning person, and that 4 hours of sleep is a gift, and you can still get up, get moving and manage to look pretty in spite of that. And on having luxurious 6 hour sleep-in days, the sound of the overnight feeding pump running out has become your alarm clock.

You are not in Kansas anymore.

and you know you’re not in Holland either

All you know is that life has tremendously changed you and wherever you are is where you should be… and it feels just like HOME.