Medical Appointment Marathon

This week we had a 2 day marathon of doctor’s appointments. Here are the details:

Day 1:
Early AM: Craniofacial Team
- We met with plastic surgeons 1st thing in the morning. They checked Isabella’s palate and discussed what happens when children have a cleft palate with regards to how the facial bone develops and this being the reason why they need children to be a little bit bigger before corrective surgery can be done. We discussed possible dates for the palate repair surgery (end of November or Mid December) and then scheduled a pre op meeting with the CFT team sometime in August. At this appointment they will go into more detail about how the surgery process goes as well as recovery process and procedures. They also found out that my daughter has a “Ankyloglossia” or in layman’s terms a “tongue-tie” which is a congenital anomaly characterised by an abnormally short lingual frenulum and thus would need to have her frenulum cut so the tongue can extend out.

Mid AM: EENT/Audiology/Speech
- A Myringotomy is scheduled for my daughter at the end of April. This is a surgery wherein the doctors will be putting tubes in her ears to drain the fluid. This was also recoemmended as a preventative measure because since she has a cleft palate, she is susceptible to ear infections. The frenulum-cut will also be done at this same time, as well as the sedated ABR (hearing test) so they can gauge how much hearing loss she has.
- Speech therapist discussed ways to help stimulate speech and language development. We discussed with her the implications of being raised in a bilingual household and the speech therapist says that it is good to continue exposing her in both languages as research shows that it helps the language neurons in the brain become more branched out. She recommends that a comprehensive speech and language evaluation be done as early as 15 months of age.

Early PM: GI Doctor/ Nutritionist
- We were referred to the GI doctor because there have been concerns with acid reflux and vomiting feeds. This has already affected the rate of Isabella’s weight gain (in a span of a month she only gained 4oz) and so we needed more ideas to help Isabella keep her food down other than the tricks that we have already tried with her. The doctor recommends Zantac to help neutralize the acid to prevent esophageal burn when reflux occurs. They also recommended that she take in a small dose of erythromycin to help the food pass onto the intestine much quicker and of course, if there is less food in the stomach, less of it will be thrown back up. They also recommended that we mix in some rice cereal with her formula to make it a little bit thicker so it settles better in the stomach. However, all these recommendations does not necessarily solve the reflux/vomiting issues but they did say that it is hoped that when she turns about 6 months old the reflux has resolved itself. We also discussed the NG tube. They’re saying that the goal is to have Isabella take in all her feeds orally (yes, even with the cleft). If she does not then we might need to consider G tube feeding. It almost felt like it seems urgent that we take her off NG tube and do the G tube feeding because they proceeded on explaining how the G tube surgery procedure goes. However, both my husband and I feel that we may not go to that route yet since there will be adjustments made with regards to her feeding and we feel that Isabella does want to feed by mouth but because there are “mechanical issues” going on she is having some struggles. At present she takes in about 40% of her feeds orally and the 60% via NG tube. We hope that with the frenulum cut, she will get better at feeding by bottle. We told them that we will discuss that option further, should we decide to take it, when we see each other again towards the end of May. But, it did sound enticing because with the G tube we no longer need to see her with a plaster on her face to hold the tube in place as well as walk around with her having to carry a dangling tube around. They also ordered us a “kangaroo pump” to help us with the night time feedings so that she does not throw them up. They said the gradual feeding via kangaroo pump will help address the vomiting when we feed her at night (this also will help us sleep longer at night time =D). But they said to keep on trying to encourage her to feed orally during the daytime and offering her a pacifier when she takes in the rest of her feeds via NG tube so that the sucking-feed connection is restored as well as to continue with and help develop her oral muscles.

Late PM: Renal Doctor
- We discussed what Stage 3 Kidney Reflux is with out renal doctor. Then they said that we needed to see a urologist also so a consult with a Urology was sent out (another Doctor added to our already long list). They reviewed her labs in the course of 6 weeks and the lab results revealed that her creatinine levels were normal and it looks like her nephrons (kidney cells), even if there are just a few of them (because she has small kidneys) seem to be performing their job so they are suggesting that we take her off the sodium bicarbonate medication and run another set of labs two weeks after to see how her body does without them. Edgar and I are both hesitant to take her off the bicarbonate but we know that our doctor’s are doing things for Isabella’s best interest. They suggested to continue giving her the antibiotics to prevent infection caused by the kidney reflux unless the urologist suggest other things. The renal doctors also said that it seems like they would not need to see Isabella frequently and that a follow up appointment is not until 6 months. (so that’s a doctor semi-off of our long list.. yey!)

Day 2:
AM: Immunology
- We met with Immunologist and we discussed Isabella’s health history with her. She also asked us questions pertaining to my husband’s and mine’s family health history. She then says that with WHS children, about 25% of them will have immune system issues and she thinks that if Isabella does have one she would have been frequently sick (having infections) already, but she hasn’t (THANK GOD!). She also added that Isabella might also still have some of my antibodies that she got from me when she was still in my belly and from the breast milk that she got. So if the doctor was going to run a test it will not show accurate results. But she decided to order blood work anyways so that she can have a baseline to compare it to when we get to see her again when Isabella is about 14 months old. The good thing was that she kept stressing that she does not think that Isabella has immune problems... which was really good, because I do not wish to add anything more to her already long list of complications.

PM: Opthalmology
- I was not quite sure how they were going to test for vision for an infant whose only 3 ½ months old. But we went anyways, doctor’s orders. The doctor asked us questions like “Does she have eye contact?”, and ‘Does she visually track?”.. our response for both questions were ‘She can if you can lock her attention in.” The doctor then says that he thinks Isabella’s visual issues are due to the fact that she has partial agenesis of corpus callosum and perhaps that in the process of when the two brain halves are trying to connect she has problems with focusing on one thing (thus the issues with visual tracking and eye contact). However, the doctor did say that through time, the brain does find means to connect and her eye contact and visual tracking skills will get better. Isabella’s eyes were also dilated for this appointment and when the doctor checked what’s inside of her eye he added that Isabella is far sighted. I asked how he knows this and he says that it shows in the way the light reflects in her retina. (So that was very interesting) He added that most babies are far sighted but we need to keep a close watch and if her far vision issues continue over time or if her vision issues do not get better, then she might need glasses even before she turns one. A follow up was scheduled for the end of July.
- When we got home that day we tried visually stimulating her from a distance. We were able to successfully elicit more instances of eye contact and social smiles and visual tracking of objects. So I guess that kinda solves why she was not looking at us or an object even when we are right there close to her face… no wonder, what she probably sees is a big shadowy blob. It was good to know that she is far sighted so we can do our visual stimulating from an appropriate distance.

Roller Coaster

Worry, worry, worry, pray, pray, hope, pray, shock, SHOCK! Scary.. shattered.

Denial, No, No, No, NOOOOOOOOOOOO!

Sad, cry, sympathy, condolences, grief, grief, mourn.

delusions, demented, development, daughter, dream, dead, diagnosis, deletion detected, de novo... defeat.. DELIVERANCE!

demons, demons, drive away the demons!

DON'T, DON'T, DON'T!

Fear, unknown, lost, loss, grief, anguish, scared, anxious.

Anger, anxiety, adapt, accept? accept? accept? Disillusion.

Research, reason, reassurance, reassurance, reality? reality? really? REALITY!!!

Alone, isolated, alienated, uncertain, paralyzed, pity, pathetic

Envy, empty... erase, escape, emotional.

Hateful, negative, bitter, resentful, rebellious, remember, retrace, regress.

Disappointed, disheartened, devastated, discouraged, pessimistic, dying, despair, depressed…. deeply depressed.

Incapable, incapacitated, suicidal, discouraged… tired.

condition, cause? chromosome, CRAP!.. confusion, clueless, composure, CRAZY, CRAZY, CRAZY... karma? QUIEEETTTT!

Cornered, no cure! Crushed, cursed? Cry, Release, regret, resent, restless…. Tears… rain, rain, rain.

Shame, guilt, skeptical, distrustful, sulk, misery.

Nothing, numb, nonchalant, empty, woe, why? Why? Why? WHY?

Fate or faith? Pray, pray, pray… PRAY!

Suppress, silent screams, SCREAM! SCARED! Sigh, sigh, sigh…

Singled, random, special needs, syndrome…. Sorry, sorry, I’m sorry. I’M SO SORRY!

Victimized, robbed, ripped off, wronged, run, run far, far away?

Forever dependent… future? What future? Cannot fathom? Fear… FEAR!

Dark dark dark tunnel? Light at end of tunnel? Freight Train at end of tunnel? Fireflies flickering in the tunnel? Dark, dark, dark….

Grief, guilt, gray area, gone, give in…Gasp! Gosh! Just Go, Go Go! Gotta Keep on going, going, going!

Truth… bitter truth…. Tragic or Test? Need time, time, time

Lifeless, dejected, dismayed, suicidal, death wish. Doomed? Damned? DAMN!

Reserved, suspicious, wary, preoccupied, People, paranoid… people, pity, self pity… pretend, pretend, pretend.

Inferior, sensitive, insensitive, annoyed, insulting, unwelcome… understand… understand, understand. Unsure, but keep trying to UNDERSTAND!

Humiliated or humility? Humble, humble, hoping, hoping… HELP!.

Bruised, Broken… Burden or blessed? Blessed… blessed… blessed. Baby, Baby, Baby.

No, No, No, NOOOOOOOO! Yes.. yes… yes… yes.

Weak, Where? Wait… worry, worry, WHAT? Woe... WHY! WHY! WHY!

Therapy, Specialists, Hospital, health, heal, please heal… but How? How? HOW?

Pain or patience? Panic, Patience…. Patience…. patience. PLEASE!!!

Forward, forward, backward, forward, forward, forward, backward, forward… keep on going forward.

Skeptic, sarcasm, sorrow…strength, strength, need SPIRITUAL STRENGTH!

Optimistic? Not yet…. Open, open, open. Okay…. It will be okay. It will be okay.

Unsure, uncertain, upset, cannot undo… understand, understand, UNDERSTAND!

Anxiety again and again, and again, and again.

Explain, explain, explain over and over and over...

Endure?... Eventually.

Someday.. soon, soon, soon, soon, soon.

Proactive, progress, progress… paralyzed… progress… paralyzed again… progress again.

Challenge, change, change, change.. CHANGE!

Advocate, adjust, adapt, accept? accept? ACCEPT!

Enriched? Lucky? Gift? Growth? Learning? LORD HELP ME!

Receive, surrender, let go…. Thy will be done.

Grace? Joy? Hope? Love? Peace?

God is Good… God is good.. God is good.

... Coping ...

When faced with a difficult situation we need to find a means to cope. In the process of coping we will find ourselves in a state of anxiety which results in feelings of mental and emotional tension and/or stress.

When anxiety is felt, our mind responds by seeking a means to problem solve its way through the anxiety, either to reduce it or to get rid of it completely. When the nature of the problem is so complex, we sought to find mechanisms to defend ourselves, our bruised egos.

A typical reaction to protect the self is taking oneself away, often times physically, from the unpleasant situation… your rational means to escape.

But what if you cannot escape the unpleasant situation? What do you do then?

I am coping the best way I can. I have found myself resorting to healthy and unhealthy means to cope. Means that were not thought of deliberately, nor result in actions that were intentional. Means that lead me to an unconscious route to try and transform reality… my reality.

I have intellectualized my situation to objectively understand it.
I have rationalized to the point that I have created false justifications.
I have found myself in moments of regression, crying my eyes out while in fetal position.
I have resorted to avoiding the queries about my issue, including my own mind’s queries about my issues.
I have had many moments of emotionality, having outbursts, manifesting extreme emotions, and acting out like a child having a tantrum to the point that my husband needed to push me in the shower so I will calm down.
I have inhibited myself from making goals and lowering my expectations of my daughter… yes to the point of seeing her as a statistic and not giving her enough credit.
I have delved into a world of fantasy every now and then… one that involves a miraculous cure to undo the syndrome, or that the cysts in my daughter’s head will press on something to heighten her other senses (like having super powers).
I have idealized trying to ignore the negatives and focus only on the positives.
I have found myself sometimes procrastinating and delaying so my husband or my mother in law would put in more care time for my daughter.
I have found myself in a state of pretense… a state of denial that I am doing alright, that I am strong, that I can do this, that everything is okay.
I have found myself repressing thoughts trying to stop myself from thinking dark things.
I have found myself trying to find the humor out of this situation, only to realize that it is more of witty sarcasm that is spewing sporadically from out of my mouth.
I have found myself resorting to symbolization by turning my thoughts (good and bad) into metaphors.
I have trivialized my circumstance to try and pretend that this arduous predicament I am in is not that big of a deal.
I have thought of ways to “undo” things to reverse the present, but there is no such thing as “undoing” (I don’t think I can grow a chromosome arm on a petri dish).

I have, a million times, flexed and cartwheeled and stretched the boundaries of my cognition to find understanding. BUT the coping mechanisms I have resorted to have not really helped lessen the anxiety. The coping mechanisms are not a cure to my situation. It is only a means to adapt to the situation… mechanisms (including writing) that provide a temporary means to escape.

There is still this constant worry about Isabella’s outlook.
There is still this constant fear of the unknown future.

And I feel powerless… helpless in my daily confrontation with reality.

But I try… I really try.

Eventually I know I will get to that place where I will find myself transformed and I am once a gain a fully emotionally healthy functioning part of society.

I try…. every second of every moment of everyday I try my best.

Litany of Complications

My daughter has a rare genetic disorder called Wolf Hirschorn Syndrome. Since it is rare, hardly anyone in the special ed community has heard about this. So when people ask what this is, I usually have to go tell them about the 4th chromosome deletion, what developmental delays are to be expected, and the list of complications that my daughter has.

When it comes to the part of saying all of the complicated things that Isabella has, I cannot help but choke on tears. Its just seems too much for a small 7lb baby to handle.

Last night when a friend and I went to meet a group of parents with special needs children, I had to introduce myself, and of course I have to go tell them about my 3 month old baby, and yes… the litany of complications. And just as expected, I found myself crying in front of people I just met.

For one more time I will list the complications that my daughter has… here they are.

Atrium Septal Defect
interhemispheric cysts in her brain
Sub arachnoid cyst in her brain
Mega cisterna magna
Partial agenesis of the corpus callosum
Parabilliary cyst
Cleft Palate
Kidney hypoplasia
Hearing Loss
Wolf Hirschorn Syndrome
Acid Reflux
Kidney Reflux

I'm just waiting for the seizures to start anytime soon.

As usual, I’m crying again as I am typing this.

However, this time I promise myself that this will be the last time that I will let my emotions take over me.

Kidney Reflux

Yesterday, we had to take Isabella back to Palo Alto because we have a VCUG appointment. The renal doctor just wanted to check for kidney reflux. I guess it was just a usual medical route for children with hypoplastic kidneys.

The moment our car turned towards the entrance of the hospital, I cried. The memories of our stay in that hospital just came rushing back. I have come to associate this place to bad memories and more bad news. As we were waiting to be called inside the radiology lab, I found myself whispering in Isabella’s ear. I told her that this is just one of those routine checks that the doctor has ordered and that I assured her that we will be leaving the lab knowing that she does not have kidney reflux.

I was wrong.

Turns out she has stage 3 reflux on her left kidney and she would need daily doses of antibiotics to fight infection from this point onwards.

So there… I have to add this to her already long list of things.

Sitting On the Parent's Chair

I'm officially on the receiving end for special education services.

Today we had our very first Individualized family Service Plan Meeting as my daughter was determined eligible to receive services via the Early Start program of the regional center in coordination with the special education department of the county office of education.

The day before I had to fill out forms to get my daughter placed for the early intervention services, your usual start up process... i had a melt down filling out the forms. After all, it was different this time.... i had to fill out a form as a parent rather than the case carrier/special education teacher. I almost didn't finish filling them out.... but i had to and eventually i would have to get used to it.

It was weird seeing my name on the parent line on the meeting notice form when usually i would find my name at the bottom as the case carrier.

It was quite odd to meet people who are colleagues having to take in the role of service providers for us, the parents.

When the psychologist/administrator designee asked me about my daughter, my initial thought reaction was "Didn't you read/review the files prior to this meeting?"... most likely this was due to the fact that i already am tired giving a litany of the complications that my daughter has. But i did it anyways. I almost choked on tears, but I was able to hold it up pretty nicely.

We were read our rights, blah blah blah we know that already as we talk about it with the parents we've worked with. We were handed a book of resources in our area, the same handbook that was in a corner in my husband's classroom that he would pull out to provide resources with the parents he works with. We heard the detailed reports and results of the assessments that they have done with Isabella, and goals within the year were discussed. Same process and meeting agenda that we are already familiar with when we facilitate IEP meetings.

And although the purpose of all this is to have a plan of action to help my daughter reach her fullest potential... somewhere deep inside I felt helpless, clueless, and weak. Although i may have to say that i was able to fake it really well.

Advocating for my very own flesh and blood feels very different as i still feel crippled by the emotions that come with the reality of my situation.

It feels a little weird having to be on this side of the table. It might take some getting used to.