I have started a new web page, so I can add pics and not have to upgrade.

http://matthewsjourney07.blogspot.com/

This one will still be here as well, but the other will take off from here.

Please visit and let us know you have found us!!!!!

Well to start off we took the family to Sears Portraits to have family/X-Mas pictures done, I can say it has been the WORST experience I have ever had with a Studio and the worst $200 I have ever spent!!! You can call and email and they won't even reply to the issues your having. I say please beware of using them....

Zack has seen 2 of the 3 Dr this week, We know he will not have to have surgery on his testicles BUT will have to be circm. because of medical reasons.

Also we have had a few test ran by the endocrinologist, Zack's Cortisol levels are good, we have to wait till after the holiday to find out about his Thyroid levels. But his Sodium levels are high and that is pointing to DI (diabetes insipidus-water diabetes) which is where the body can not retain water, this is one reason why Zack pee's so much. It very dangerous as he has very good chances of becoming dehydrated very easily, he is always very thirsty. Things could be worst. I am glad that his Pituitary is producing at least some of what it is suppose to. BUT this means the Hospital is going to contact me early next week to set up an appointment to admit him hopefully just over night to try to get this under control with medication, then we have to be taught of the dangers that can follow with this. And be educated about this condition. The treatment is DDAVP which can be given in the nose, by pill or injections. We just have to find out which will be right for Zack.

On a great note: Zack is now 19.6 lbs and is 28 inches long!!!! He has come so far from the tiny little one I got back min July. He is also in alot of 12 month clothes!!! YAYY go Zackie!!!

He is also babbling a lot more, and is now saying mamamama and mom...if he puts the two together of who is who I'm not sure yet. He is now taking his toys and using both hands, switching between hands and coming into midline with them.  He is seeing some, but with only 20%nerve tissue we still aren't exactly sure how far or what he is seeing and  neither are the Dr's at this point as he is to young to try to figure out exactly what he is seeing. The good news is he IS learning!!!!

Also we have noticed that when he is hurt or upset he does want to be held and wants comfort from us. He will lay his head on your shoulder and wrap his little arms around your shoulders, and he calms pretty easy then starts to laugh and babble  LOL

He knows who we are and cries for us to hold him and cries more if we put him down and that is not what he wants, he rest his head on us when holding him.  Which we love!!

We was hoping to have pics to post BUT Sears Portrait Studios sucks!!!!

Here is what we know so far:

Septo-Optic Dysplasia/
De Morsier’s Syndrome

Introduction

Septo-Optic Dysplasia (SOD), also known as de Morsier’s syndrome, is a rare disorder characterized by visual impairment, pituitary deficiencies, and specific brain abnormalities (absence of the septum pellucidum and corpus callosum). SOD may be apparent in early infancy, during childhood, or, in some cases, as late as adolescence. In some cases, individuals with SOD will have brain abnormalities that affect just the structure of the brain, while others will have abnormalities that affect the function of the brain. Typically, however, a child will have both types, resulting in problems ranging from mild to very severe.

The cause of SOD is unknown, however, there is evidence for both genetic and acquired cases. While there have been reports of SOD occurring in two children from the same family, it is typically not the case. Most cases are sporadic (or random) in nature. In fact, some researchers believe that SOD is the result of a lack of blood supply or oxygen to the front part of the brain during a critical stage of fetal development.

Features and Characteristics

The following features have been identified in some children with SOD. Not all of these characteristics will be present in every child:

• Optic nerve hypoplasia (underdevelopment of optic nerves), resulting in mild to severe vision impairment
• Nystagmus (involuntary movement of the eyes)
• Pupil dilation in response to light
• Inward and outward deviation of the eyes
• Absent septum pellucidum
• Absent corpus callosum
• Hypopituitarism (diminished activity of the pituitary gland), resulting in various hormonal problems
• Hypotonia (low tone)
• Seizures
• Intellectual impairment (varies in severity from learning disabilities to mental retardation)
• Psychomotor retardation (delays in skills that require the coordination of mental and muscular activity)
• Jaundice at birth
• Sensory integration dysfunction

Pituitary Deficiencies

The pituitary gland is found at the base of the brain. It plays an important role in that it makes hormones and directs other glands in the body to make hormones. These hormones are required for growth, energy control (metabolism), and sexual development. Individuals with SOD often have problems with their pituitary gland and as a result, have difficulty making these much needed hormones (known as hypopituitarism).

The following hormones may be affected when there is a problem with the pituitary gland:

Growth hormone - When there is a lack of growth hormones, a child will grow slower than normal. Without treatment, a child will be shorter than expected when growth is complete.

ACTH - This hormone, made in the pituitary gland, signals the adrenal gland to make cortisol, which is needed to help the body create energy, control blood sugar, and allow for proper heart and lung function.

Thyroid hormone - This hormone is made by the thyroid gland in the neck. With a poorly functioning pituitary gland, the thyroid gland does not get the proper signal to make this hormone. A lack of thyroid hormone can result in poor growth, slowing of mental and muscle function, weight gain, irregular menstrual cycle, hair loss, hoarse voice, brittle nails, and coarse skin.

Anti-diuretic hormone (ADH) - This hormone is produced by the pituitary gland and is responsible for keeping water in the body by controlling the amount of urine that is created. Without enough ADH, a person cannot control the amount of urine and may lose too much water from the body, resulting in dehydration. Dehydration can lead to serious problems. When a child does not make enough ADH, he or she is referred to as having diabetes insipidus.

Sex hormones - The pituitary gland produces two hormones that are involved in sexual development. During teenage years, these hormones are responsible for sexual maturation (puberty). They also control a woman’s menstrual cycle. Without these hormones, a child’s sexual development is delayed, a girl’s menstrual cycle is irregular, and pregnancy becomes difficult.

Hormone replacement therapy is available for all of the above deficiencies, either by mouth or injection.

Vision Impairment

Optic nerve hypoplasia (ONH) is a condition where the optic nerves are small and underdeveloped. The typical person has over 1 million nerve fibers from each eye to the brain. Individuals with ONH, however, have far fewer connections. The fewer connections between the eye and the brain, the worse the vision. The severity of the visual impairment for individuals with ONH can range from near normal vision to complete blindness.

In addition to ONH, some children with SOD have nystagmus, which are unusual eye movements. The eyes seem to move around with no real pattern or purpose. This occurs because the eyes are not able to focus well enough to hold still.

Diagnosis

A diagnosis of SOD can be made based on specific findings. A child suspected of having SOD should see a team of specialists to confirm the diagnosis. An ophthalmologist can diagnose ONH by looking into the eyes with an ophthalmoscope. A neurologist will determine, either by MRI or CT-scan, whether the septum pellucidum (and in some cases, the corpus callosum) is absent. And, an endocrinologist can determine whether there are pituitary deficiencies that will result in hormonal problems. If there are positive findings in these three areas, the child may then qualify for an SOD diagnosis.

Treatment

There is no cure for SOD, therefore, treatment is symptomatic. As mentioned earlier, hormone deficiencies can be treated with hormone replacement therapy. Vision therapy and services will likely be required, and physical and occupational therapies may be helpful for mobility training. What’s important to note is that if SOD is diagnosed early and the hormone deficiencies are identified, many of the symptoms seen in children with SOD may be prevented altogether.

What to Expect

The prognosis for individuals with SOD varies according to the type and severity of symptoms. While a neurologist can determine at an early age if there are brain abnormalities, he or she cannot determine whether the child will have problems with brain function. In children less than 3-4 years of age, it is often difficult to predict future brain function such as speech, intelligence, or learning.

We all got up at 5am this morning, well Steve and I did... Zack was already awake   LOL!!   He ate his breakfast 2hrs early so I only got down half of what he normally eats because he couldnt eat after 6am.

We got to the hospital early, so they did his Ultrasound earlier than scheduled.... But we did have to wait for the MRI to be done. At around 8 they came and got us and started prepping Zack... He was really good until they started looking for a vein  LOL    and screamed bloody murder while getting the IV...But was fine as soon as they let his hand go...About 20 minutes later they came in to give him the first of his sedation meds... before she even got done he was laughing and acting all goofy... wish we could have taped it..It would have been priceless!!!

While we was there we weighed him again, as you know the Nutritionist was here on Tuesday and he was 17.8lbs. Today 3 days later he was 18.3lbs.... I was shocked and reweighed him LOL  and it was the same thing!!! My friend Kim asked what in the heck are you feeding that baby? LOL

Friday we go for his eye appointment, and we still have O/T coming out. And after we get something in writing we can get Delta Gamma here to look at Zack too....But since they only work with Visually Impaired children we have to wait until they get something in writing stating this.

So until next week, we wait for the results...and see IF he is going to have to have surgury.

I promised pics and I will get those tomorrow.... this week has been hectic.

She came at 4:45 tonight, she is a very nice and said that IF Zack case was taken she would be the one to see him on a reg basis. I'm glad for that.

So here is what she had to say:

Zack is now 17.8lbs (big jump from his 13.5lbs back at the end of July 4.3lbs in 3 months isn't bad)                                                             He is now 27.5 inches long (he keeps getting longer LOL)                       So he is gaining weight and growing, she thinks he is in a growth spurt right now (YAYYY it's about time )                                                     Even with his weight gain and growth he is only at 3% for his age on the charts....I'm just so happy he made it on the charts... he would not have a few months ago.

As far as his eating, she wants to keep him at 32oz of formula a day and his 4 jars of food a day to maintain a good calorie intake.  She wants me to cut out at least one of his juice bottles (he has one in the mid morning after his first nap and one after his afternoon nap)She said if anything else replace it with another formula bottle as juice has no value to it and is just empty calories and wants us to start reducing the water in his night time bottle to get him to NO bottles at night. And we are putting him on vitamins.

She also said NOT to make dinner time a fight or struggle, it will traumatise him and that will cause more problems with food. She said he is at about the 4 month stage right now and just kinda let him call the shots on when to move to the next stage of food not to force it on him.(but at time if I didnt force it he wouldn't eat at all)

She also said we have done a great job so far getting him to where he is. I was so happy to hear that, it made me feel good to know I have been doing something right.

Now we wait on O/T to come and then they will all have a meeting and we see where we go from there.

Friday is the BIG day with the MRI(for his brain) and Ultrasound(to find his testicles) Please pray everything goods good as everything else has so far....I really hope they don't have to do surgury to retract his testicles. But it is looking like they will, as they still have not droppped on their own.

Zack has also been home 1 month this past Friday. He really is doing well!! He is rolling from side to side including his belly and will now play on his belly without being forced. He is now even sleeping on his belly(what a change)He still will not push up with his arms and is not putting weight on his legs but he is come so far in 3 months...He is like I always say "My lil Trooper" mama keeps pushing and putting him through hell some days but I know it is for his own good and he is moving forward.

I go back to work Monday and I have been depressed for about a week. It is going to be so hard to leave him after being with him everyday for the last 3 months...I can't even imagine not seeing him for 9 hrs a day... There is noway I can/will go back to work and work 60-70hrs a week and 6-7 days a week and I refuse to do so. I will not miss my son growing up, plus we have a lot going on with him right now with Dr appointments and therapist. Don't get me wrong I like my job, but I LOVE my son!!!

I will post some pics tomorrow when I get them uploaded....

As many of you know we used a dear friend in Guat to help us complete our Adoption. Her name is Mayra Garcia, she is a wonderful person and cares so much for the children and thier futures.

Here is a site to help the children that her family has started, please read it and help if you can. I can say without a doubt this woman is trust worthy and honest and her passion is truly for the children!!! There is pictures of some of the children you could help. please look at those little faces and try to undrestand what she is fighting for. Below is her letter she sent out to families.

The Barium test went well, and everything seems to working the way it is suppose to.

Now onto the next test of test this next Friday, the MRI and Ultrasound... lets pray those come out good as well.

Everyone we have seen or talked to in the medical profession has stated that Zack is in the condition he is in because of HORRIBLE CARE and NEGLECT. The care our worthless Agency was suppose to be in charge of!! What kind of Agency don't give a damn about the kids?? FAITHFUL ADOPTION!! I feel they are accountable for everything that went wrong in Guat with our adoption.(not talking about the laws or PGN) just ALL the curruption and lies!!!

At this point I am angry and sad.... Angry that they would let a child be treated this way and not trust what the AP's was telling them and Sad that Zack has to endure all of this. When simple care and love would have prevented all of this. I sit some days and just cry watching him and knowing how hard his little life has been. He deserves/deserved so much better than they ever gave him. I mean he is an innocent child.

I am sitting here watching him play on the floor and am so grateful and blessed he is home and away from these people.

A big shout out to:

Kim, Lannie and OZZY: They will be home next week!!!!!

Tamara and DOMINIC: They will also be home next week!!!!

CONGRATS GUYS!!!!!!   HAVE SAFE TRIPS HOME!!!!

Tomorrow is Zack's test and I am dreading it so bad. I mean what exactly do they do?? Is he going to scream bloody murder??

Then Thursday we have a S/T coming to evaluate him and she also wants to see/watch him eat, well that is going to be a BIG chore... as he now HATES to eat anything...it is a battle to get his 3 meals a day in him...The only thing he doesnt fight is Carrots and sometimes Gr beans.... and he can't eat carrots 3x's a day, he will turn orange  LOL

Plus we have friends living in Guat waiting on PINK right now!!! YAYYYYYY Kim, Lannie and Little Ozzy!!!!!!  You all will be home in NO TIME AT ALL NOW!!!!  Can't wait to see your POST!!!!!

And another friend, Kim still waiting on her BC from Coban.... I am praying she gets it this week as it is time for Katelyn to come home. She is a month older than Zack and just a precious doll!!! She has also been sick with Bronchitis and on meds and a Nebulizer just as Zack had been... please pray she feels better soon.

I'll post after we have the test tomorrow and let ya know what we are told.